Denying Healthcare Information on Flu Prevention Alternatives
Remembrance Day Autism Style

The Failure of The Autism Treatment Network's Dietary Intervention Program

Money down drain dollar sign waterBy Katie Wright

It is so disheartening that the Autism Treatment Network’s dietary intervention research program has accomplished so little over the course of 5 years. In that time hundreds of thousands of dollars have been wasted in badly designed, poor quality research studies.

 Not 1 child has been helped by ATN’s dietary research program and no breakthroughs of any kind have been achieved.

Under the leadership of Dr. Susan Hyman of Rochester NY, ATN’s dietary intervention research has been based on outmoded science. Remember the FDA’s touted nutritional guidelines of the 80s and 90s? Remember the “Food Pyramid”? Remember how the pyramid was about 25% bread and made all of us fat? Well, Hyman studies the “Food Pyramid” of autism dietary intervention research, courtesy of your tax dollars and mine.

Dr. Susan Hyman conducted the same dietary intervention research studies in 2001, 2003, 2009 and again in 2011.  All these studies use the same bad design, the same dated recipes, the same selection bias errors and produce the same useless results.

2003 CAM (Hyman labels this complementary, alternative medicine)  GF/CF study -- result was no useful insight, no helpful recommendations. Conclusion: more research needed. You will see a theme here…

2005 CAM dietary intervention study, conclusion: no useful insight, more research needed

2005 CAM dietary intervention study, conclusion: basically nothing works, more research needed.

2007 ASD kids might have taste impairment (how about a gastrointestinal impairment? Lets study that!), more research needed.

2008 Doctors need  to develop “communications strategies” for dealing w/ CAM parents who employ dietary intervention methods. Somewhat like how parents need “communications strategies” for dealing with troubled teens.

2008 CAM “clinical providers need to understand the efficacy, and lack there of, of CAM.” More research and “communication strategies” needed here as well.

2011 GF/CF diet studied -- no effect -- more research needed.

OK, from 2003 to 20011 Hyman has conducted 7 studies on ASD dietary interventions. None of Hyman’s studies have produced any original insights or discoveries. Later you will read about innovative dietary intervention research completed for a fraction of Hyman’s smallest budget. Groundbreaking emerging research has produced incredible insight as well as extraordinary here-and-now opportunities to help ASD kids in poor health.

It is especially disappointing that Dr. Hyman’s research is devoid of input from an ASD specialist nutritionist, an ASD parent professional or even knowledge of post-2003 dietary interventions. Dr. Hyman fired renowned author, parent and nutrition expert Susan Seruossi in 2009.  Seroussi had lobbied for longer trials and the removal of processed food and artificial flavorings and colorings from the study.

Hyman’s GF/CF diet has allowed artificial colors and ingredients, as well as rice and potatoes. Artificial additives/colorings can cause ADHD (present in so many ASD kids). Even the FDA agrees! Not one parent I know who uses GF/CF allows garbage, processed food in their child’s diet. Although potatoes are not technically gluten they have a powerful opiate affect on this subset of ASD kids and lead to ever-stronger cravings for more carbs.  Once again, these foods are usually not part of the GF/CF diet.

Hyman does not provide the kids with low oxalate food.  This is so important. If you have a hyperactive child the GF/CF diet will be useless if the child is regularly eating high oxalate food. Certain types of nuts, fruits and vegetables have extremely high oxalate levels and will only decrease a child’s ability to focus and sit still. Food high in phenols, like bananas and red grapes, can also lead to hyperactivity. High phenol foods frequently trigger allergic responses in the form of eczema and diarrhea. Old GF/CF diets allowed soy. However soy is a highly processed food and we now know that many ASD kids develop allergy-like symptoms as a result. Coconut milk, now found in most groceries stores, is a far better milk substitute. I could go on and on about why Hyman’s CF/CF diet never gets positive results, but you get the picture.

Most importantly Hyman excludes kids with GI disease and immune dysfunction from her studies. They are THE population who are most likely to benefit from an appropriate intervention dietary intervention!

Imagine doing a verbal intervention study of ProQuoLo on a group of HF to LF ASD kids. This program allows nonverbal kids to have a voice and make choices and requests. The study would produce amazing results if confined to nonverbal kids, but imagine if the study enrolled all types of ASD kids. The outcome would be null. At least half of the kids studied already have speech. Such an intervention would be useless and annoying to them. The positive effect on the subset of severely affected nonverbal kids would be totally lost due to the study design. That is exactly how Hyman’s dietary research work is conducted!

No one is arguing that all ASD children need to be on a special diet.  A big % of ASD kids are healthy and do not have GI or immune problems. For these ASD kids the GF/CF diet would be an intrusive, unnecessary intervention. But this is the population Hyman studies! We need to study the specific subsets with GI and immune problems who most likely have nutritional problems and will benefit from a dietary intervention and vitamin supplementation.

Over the past 3 years well-designed emerging ASD research on diet and health has yielded exciting results. Unlike older dietary intervention studies, new nutritional ASD work is  scientifically up to date and well designed. Current dietary intervention research studies urinary peptides, gut bacteria, diet and seizures as well as vitamin supplementation. This research, conducted by innovative, open-minded scientists, has really moved the science forward.

2007, Katzen-Luchenta, “the nutrients implicated in lifelong health include iron, zinc, magnesium, selenium… and essential fatty acids…these nutrients lower the risk of neural tube defects, autism and dyslexia. Today’s foods are often processed beyond the cell’s recognition.” * Get rid of processed food! Supplementing with magnesium and omega 3 is so helpful.

2009 Pardo- Gavea, Solis, Anez, “Immunogenic Aspects of Autism.” “Hypersensitivity to specific groups of food such as casein and glueten has become clear.” *key words “certain groups.”

2009 Reichelt, Knivsberg, “The possibility and probability of a gut-to-brain connection in autism.” Excessive levels of urine peptides are found in kids with autism. Their research “shows highly significant decreases (of urinary peptides) after introducing a GF/CF diet with a duration of more than a year. We refer to previously published studies showing (children) improving on this diet who were followed for 4 years. The literature shows abundant data pointing to the gut brain connection.” Hyman’s research studies only last a matter of months.

2010 Masino et al. “Ketogenic diet and epilepsy.”  Epilepsy is common among ASD kids. Repeated seizures are frequently treated with powerful, sometimes debilitating medications. Combating seizures via a ketogenic diet is safe and often successful.  Positive “therapeutic implications (w/ ketogenic diet) extend to acute and chronic neurological disorders as diverse as brain injury, inflammatory pain and autism…” *

2010 Whitely et al. “GF/CF dietary intervention for children with ASD.” “Our results show that dietary intervention may positively affect developmental outcomes for some children diagnosed with ASD.”

2011 Adams, et al, “Gastrointestinal flora and GI status in children w/ ASD.” “Children with severe autism are more likely to have GI problems.  ... Children with autism have higher levels of good bacteria and lower levels of good bacteria." * Obviously appropriate dietary changes can promote a better good/ bad bacteria ratio. This is why phenols and high oxalate food should not be part of any GF/CF diet.

2011 Kalunza-Czaplinska, “vitamin supplementation reduces level of homocysteine in urine of ASD children.” “Our findings may lead to the recommendation of vitamins B6, B12 and folic acid supplementation in the diets of children w/ ASD.”

2011 Kalunza-Czaplinska, “B vitamin supplementation reduces urinary dicarboxylic acids in ASD children.” “Urinary dicarboxylic acids are an important source of information about metabolism and potential problems especially connected with energy production, intestinal dybiosis, and nutritional individuality in autistic children.” B2, B6 and a magnesium supplement reduces the level of dicarboxylic acid in children with autism.

2011 Williams, et al, “Impaired Carb. Digestion and transport and mucosal dysbiosis in the intestines of ASD children with autism.” “Impairment of primary pathway for carbohydrate digestion and transport in enterocytesintestinal bacteria revealed compositional dysbiosis manifest.”  *Carbs cause dysbiosis in a subset of ASD kids!

OK, all these studies are basically saying that many, many, many ASD kids have GI problems that can be mediated with appropriate dietary interventions. ASD GI problems are closely related to health status and ASD severity. There is abundant evidence that many ASD kids cannot properly digest carbohydrates and benefit from dietary changes and vitamin supplementation. Why isn’t ATN doing something to help these children? Why is ATN, instead, investing over and over again in useless over-generalized dietary intervention research?

I am not writing this to bash ATN, only to create awareness, within ATN and elsewhere, of the exciting emerging dietary intervention science. I sent a draft of this post to Dr. Dan Coury, president of the Autism Treatment Network. I asked Dr. Coury if he had any comments or corrections. He never responded. If readers want to share dietary research studies that I missed, please do. So the next time any parent goes to an ATN site and they say, “there is no science behind dietary interventions,” you might want to update their information.

Some of my favorite sources:

Julie Matthews

Judy Converse

--

Katie Wright is a Contributing Editor to Age of Autism.

 

 

 

 

 

Comments

Steven Piglia

Clearly this is an old thread, but I just came across an article from 2000 that Karyn Seroussi states she started ANDI in 1997. Is this the same Seroussi that Dr. Hyman fired from ANDI because she lobbied for longer trials and the removal of processed food and artificial flavorings and colorings from the study?

Carolyn M

Hi Benedetta,

I think that mitochondrial dysfunction is a large piece of the problem. I think that there are a number of things involved which, with a disastrous synergy, act to cause the varied issues which plague our children. Toxins are very likely involved.

The thyroid may be involved in some instances as well. The article I cited from Autism Science Digest earlier discusses several ways in which hypothyroidism could be linked to autism. Although one of them is gluten sensitivity, another was mitochondrial dysfunction.

I do not believe that fixing an underactive thryoid alone (ie. without implementing any other biomedical interventions) will successfully resolve all of our children's many dysfunctions in all cases. Investigation of the possibility that a child has hypothyroidism should be considered, in light of the information in the article in Autism Science Digest.

lisa

Carolyn,

I asked you two simple questions and you refused to answer either of them, choosing instead to give me a reading list. I have read extensively on this subject for nearly four years. I don't pretend to know everything; I am learning new things all the time. Some of my prior assumptions are changing in the face of new information. I do have concerns about parents who dig in their heals after making assumptions based on incomplete information. I think that such parents are guilty of the very same thing they so often accuse the medical establishment and media of: closed-mindedness. Science advances much more slowly in such an environment. Luckily, it still advances.

People can be very, very sick with what was once considered mild hypothyroidism (the definition of what is mild and what is moderate has changed in the past few years; many doctors are still unaware of the change).

So, when research shows that many autistic children have thyroid disorders, I certainly wouldn't minimize the effect that this could be having on them -- both physically and mentally. It is definitely worth exploring if you haven't done so already.

Benedetta, there are two types of thyroid medicine: synthetic (synthroid) and natural, which is made from dessicated pig thyroid. They are very different. You can read up about this on the Internet. There is extensive information comparing the two. Many people (like myself) who do not respond well to synthetic hormones will do very well on a natural hormone. For a long time, the most popular by far of the natural thyroid hormones was Armour Thyroid. Then, about 4 or 5 years ago, the FDA ordered the U.S. company (Forest Pharm. out of St. Louis, MO) to add synthetic preservatives to its product so that Armour would have a longer shelf life. This ruined the formula. Many people were getting sick from it; others simply saw their thyroid condition deteriorate after many years of stability. The company took Armour off the market for a couple years, re-formulated it, then recently put it back on the market, but this didn't fix it. So now, my doctor is ordering Armour Thyroid for me via Canada Drugs, from a drug company in Europe that still uses the original Armour formula.

Many doctors will not prescribe any natural thyroid hormone because they only learned about synthetics when they went to medical school, and Synthroid currently monopolizes the advertising market. You have to search to find a doctor who will. You may have to search even further to find one who will order it via Canada so that you can get the European version.

In addition to Armour, I am also taking iodine (5,000 percent of the USRDA of iodine, which is artificially very low), and selenium. You can read up on the benefits of iodine and selenium for thyroid disorders online as well.

Benedetta

I think;
that the whole thing is the metabolism pathways are damaged or something is interferring with the metabolism (probably the B cells) but our metabolism can no longer handle the carbs. That includes all the carbs in milk--I don't know about you two, but I always thought that milk was a protein drink (almost).

I think that there are sometimes additional allergy problems - allergy to casien, allergy to gluten (or actually developing celiac disease), allergy to dyes (esp red die that is made from beetles' chitin).

In my husband's mitrochondria disease - website - not only do they say no (long chain - fast release carbs), but also no MSGs - you know the stuff in soy sauce, Chinese resturants, beef/chicken bullion/ canned soups.

I don't think Katie Wright was saying it was all or nothing - but the research that they did do was not complete, or fair.

Do each of you two think that the whole mess that our kids are experiencing are all linked to the mitochondrial disorder?

If so; thyroid is only one of the many things that are in danger of going because of damaged energy pathways - there is also the pancreas too. No matter what kind of thyroid medicine you use - if you are eating long chain carbs and your metabolism cannot handle them - your pancreas is in danger! As well as the rest of your endocrine system and as in the case of my husband also his muscles, his heart, his brain.

Lisa, this is interesting about the Thyroid medicine though. I have not looked into it at all. Off the top of your head could you tell me why or what the differences are?

Carolyn M

Lisa,

I believe that YOU need to "dig deeper". Here is your recommended reading list:

Children with Starving Brains by Jaquelyn McCandless, MD

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies by Kenneth Bock, MD

Healing Our Autistic Children by Julie A. Buckley, MD

Biological Treatments for Autism & PDD by William Shaw, PhD (the PhD is in biochemistry and human physiology)

You should be able to find these either at your local library or on Amazon.com.

lisa

Carolyn,

You said: "Also, our children often lack sufficient digestive enzymes. One of these is DPP IV, which is needed in order to digest gluten and casein."

Is there actually a test that you've had done which indicates that your child lacks these enzymes, or are you and/or your doctor assuming that these enzymes are lacking since your child is not properly digesting these foods? I'm just curious.

Also, if I may ask, what kind of thyroid-testing have you had for your child, and what were the resutls?

Finally, I am not suggesting that you are harming your child PHYSICALLY by restricting all these foods. Nor am I suggesting that you don't know which foods your child is reacting to. Any attentive parent should be noticing those details. However, a gluten/dairy-free diet that is also potato- and rice-free is in fact VERY RESTRICTIVE. I can't imagine anyone arguing otherwise. To strictly adhere to this type of diet long-term would be very difficult for anyone. I am glad you are continuing to dig for more answers.

Carolyn M

A correction to my previous post. I should have said: It is unlikely that just fixing an underactive thyroid - and not implementing any other biomedical interventions - will solve our children's gastrointestinal issues.

I apologize for any confusion.

Carolyn M

Lisa,

To respond to your follow-up post: the amount of time it would take to properly digest these foods is quite sufficient for our children's immune systems to react to them. It doesn't take long for a reaction to start.

Also, our children often lack sufficient digestive enzymes. One of these is DPP IV, which is needed in order to digest gluten and casein. Inadequate digestion of gluten and casein leads to the formation of casomorphin and gliadomorphin, peptides which act like opiates. These can enter the bloodstream (and proceed to the brain) due to increased intestinal permeability. Permeability is increased due to the presence of xenobiotics in the intestines, which produce toxins that damage the intestines. Peprides can also be mistaken for neurotransmitters by the body and adversely affect cognition.

It is very unlikely that fixing an underactive thyroid will solve our children's gastrointestinal issues.

Carolyn M

Lisa,

First, gluten and casein do not just "seem" to make my daughter sick. We have medical test results showing gluten intolerance; casein is a similar molecule to gluten, so it needs to be avoided as well. In addition, I have seen what happens when she has a dietary infraction - as have her teachers and therapists. We are ALL in agreement that gluten and casein make her ill.

Secondly, your continued "keep digging" refrain is beginning to be very offensive. I have NEVER stopped digging; like other parents who implement biomedical interventions for their children who have autism, I am CONTINUALLY "digging".

Third, your insistence that the diet is "very rigid, restrictive" and "extreme" is untrue. There are still many foods that my daughter can eat without any problem. She does NOT suffer any nutritional deficits and is not therefore being harmed by this diet.

lisa

Also Carolyn, you said this:

"With regard to gluten and casein, the problem is not just that our children cannot digest these foods. Our children's immune systems also react negatively to them. Children with autism often have an imbalanced immune system; they tend to more antibody-mediated defenses. That part of the immune system is stimulated when our children consume these foods, leading to increased inflammation."

How do you know that your child's immune system would still react negatively to gluten and casein if they were being immediately digested instead of sitting around in the digestive track for 24 - 48 hours?

It seems at least plausible that if the digestive system were properly digesting these foods, there would be no time for the immune system to react.

Just a thought.

lisa

Benedetta,

Synthroid is a terrible drug. I am not at all surprised that your condition worsened while taking it. That is quite common. I do not take a synthetic thyroid hormone for my thyroid problem -- never would.

Carolyn,

I am not suggesting that you give any food to your child that seems to make him/her sick. All I'm suggesting is that if you are having to place your child on a very rigid, restricted diet in order to see any improvement in your child's condition, don't accept it as a long-term solution. Keep digging. There may be other solutions that are less extreme.

Carolyn M

Lisa,

I do not dispute that there is a possible connection between autism and hypothyroidism. It would very likely be a good idea to consider testing thyroid function (possibly with the thyrotropin-releasing hormone stimulation test described in the article I cited previously).

What I take issue with is your apparent contention that by removing gluten, casein, rice, and potatoes that we are harming our children. In fact, failure to remove these foods from our children's diets would harm them.

With regard to gluten and casein, the problem is not just that our children cannot digest these foods. Our children's immune systems also react negatively to them. Children with autism often have an imbalanced immune system; they tend to more antibody-mediated defenses. That part of the immune system is stimulated when our children consume these foods, leading to increased inflammation - which in turn will have adverse health consequences and exacerbate their symptoms of autism.

Rice and potatoes can stimulate overgrowth of xenobiotics in the intestines. This also has adverse health consequences and worsens autistic symptoms. For my daughter, potatoes also produce a great deal of abdominal distress - in other words, quite a lot of pain.

I am glad that you have been able to improve your health.

Benedetta

Lisa:
How long has your thyroid been stable?
What dose of synthoid are you now on?

I too have a thyroid condition Lisa:
Do be careful Lisa with that thyroid.
Even if you take thyroid medicine - it will not stop it from getting worse. Even if you take iodine it will not stop it from getting worse. Well I think it won't help because it really did not help me.
For me the thyroid just kept getting worse and the docs kept giving me more and more, and more.
Then I went on the carb free diet, and now we have graduated to slow release carbsa and I am doing great!

It was my husband and children that were damaged, it was for them that I went on the diet. It was them, not me that was dignosed with damage to the mitrochondrial -it was them, not me that could not break down carbs.

I don't know about you but I could tell my thyroid was getting worse by just the pain in my heels and legs. No matter what I did, no matter how I exercised, or how strict I as on the weight watchers diet, or how much iodine I took. And those yeast infections. Oh, did you know that you can get rid of a yeast infection if you up your dose of thyroid?? I did that and it worked for a while and then it required more to get rid of it - plus I was taking more than I had been prescribed by the docs. I would think it was stable and then BAM - I would go to the doc and she would say I needed to have my synthoid dose increased.

I was requiring more and more thyroid. I am finally on the .75 mg dose of synthoid.

Only after I gave up all sugar, and all white flour and anything else that was fast release carbs did I start feeling better, and as you say the thyroid really is stable.

Well at least it has been for the last three years?? I think that there are higher doses of synthoid that can be prescribed??? But I am not sure??? Maybe I have hit rock bottom with it???

But still: if I want to feel that stiffness and pain in my heels and back of my legs - then let me eat a candy bar.

What to think on all of this?
Well, I think that the DPT shot (AKA tetanus) can be a very slow, sneaky thing - for some people - and in that case the vaccine being the cause of all this would have never been understood - if not that some poor souls like my kids and finally my husband at age 28 reacting right after them.

That is why the manufacturers, and the United States Government - NIH, FDA,CDC is all in trouble if the American people figured out that they allowed this vaccine on the market and now we are really not at fault for being FAT, being diabetic (because it is right there with can't break down carbs, and we all have thyroid problems.

May they rot in Hell. James Cherry do try to enjoy this life on the Earth because that is all the enjoyment you will ever get.


lisa

Carolyn,

I was gluten-free for nearly two years with no improvement in my hypothyroidism. It wasn't until I found a medicine that worked for me (Armour Thyroid via Canada), combined with heavy iodine supplementation plus selenium, that my thyroid improved. Once my thyroid became stable, I was able to add at least small amounts of gluten back to my diet. So it appears to me that there is some type of relationship between the two -- although for me it seems that fixing my thyroid allowed me to once again consume gluten; not eating gluten helped my digestion but didn't help my thyroid.

Benedetta

Carolyn M and Lisa- I thank both of you for so much information!
Knowledge is Power!

Carolyn M

Benedetta,

You're welcome. Thank you for the recipe.

Carolyn M

Lisa,

I do not discount the possibility that children with autism can also have hypothyroidism. There is a very interesting article on this subject in the current issue of Autism Science Digest, "The Thyroid-Autism Connection: The Role of Endocrine Disruptors" by Raphael Kellman, MD.

This article also comments on the gluten and the gluten-free diet. It first states that gluten antigen "can provoke autoimmune thyroid disease". It later states: "One of the most effective therapies for ASDs and PDD is a gluten-free (GF) diet. A gluten-free diet also can help heal an underlying thyroid disorder, as noted by the authors of the 2000 study just mentioned 4, who observed that organ-specific antibodies 'disappeared after 3 to 6 months on a gluten-free diet.' This may be one of the reasons why the GF diet is so effective in children with autism." The footnote is to this study: Berti l, Trevisiol C, Tommasini A, Citta A, Neri E, Geatti O, Giammarini A, Ventura A, Not T. Usefulness of screening program for celiac disease in autoimmune thyroiditis. Digest Dis Sci. 2000 Feb; 45(2): 403-6.

I am not discounting what you have stated regarding hypothyroidism slowing down the digestive tract, but I think that the above quote is a much more relevant factor for children with autism who also have gastrointestinal dysfunction. Our children also frequently have multiple immune system issues as well.

Please also note what I stated in my previous post regarding the specific issues involved in gastrointestinal dysfunction of children with autism OTHER than dysmotility.

lisa

Benedetta,

My own personal experience taught me about the lack of reliability in the TSH test. You can also read about it online; there is plenty of information about how unreliable this test is if given randomly one time. My own TSH goes up and down depending upon what day of the month it is. It also varies by time of day. Against my doctor's own advice, I have had my TSH tested three days apart. First time it was within range. Second time it was way off. I have also learned that I can predict whether my TSH is going to be on or off by simply taking my pulse right before the test. My normal resting pulse (as per genetics) is about 72. Whenever my TSH is off, my resting pulse is about 60. When it's within range, my resting pulse is 72. So from this experience I learned that my TSH (without medication) is fluctuating widely throughout the month. My subsequent research has led me to understand that is actually quite normal. But it does not mean I have no thryoid problem just because sometimes the TSH is off. I most definitely do have a thyroid problem, as confirmed by my doctor, and am now being treated with Armour Thyroid, via a Canadian pharmacy (because the U.S. version of Armour Thyroid, made by Forrest Pharmaceuticals, has been ruined by the FDA -- you can read all about this online too.)

There is also a growing body of research (which you can find online) to indicate that many ASD kids are in fact hypothyroid. Hypothyroidism is known to slow down the digestive track. So, it makes sense that foods that require more work to digest would cause problems for people with slow thyroids. I was having SERIOUS digestive problems myself when my thyroid problem started (and before it was treated). I cut out gluten and dairy, and it helped considerably. Now that my thyroid is once again working, I have been able to add back gluten and dairy - although I am still doing so in small doses.

Benedetta

Carolyn M
Thanks for talking to Lisa
Some people really, really love potatoes.
I will never forget my Mother's reaction to our diet!
My son too could not tolerate potatoes- even french fries.
My family "ALL" cannot break down long chain carbs.
Once you understand that - really understand it - potatoes or rice becomes not all that important.

There is also a recipe that is great for a substitution for mashed potatoes.

•raw Cauliflower - a medium head makes about a pound of florettes
•any combination of butter, milk, cream, or whatever you use when you make mashed potatoes - about 1/4 cup
-also you can use sour cream, or cream cheese too.
•salt and pepper
•If you have low carb "instant mashed potatoes", add up to 1/4 cup for texture*
•Options: minced garlic (a clove or two); garlic powder (1/2 to 1 teaspoon); cheese
Preparation:

That said:
Diabeties is really in the news today.
I think back on me getting my very first yeast infection right after a tetanus shot - 21 years old.
At 25 years old,at the end of my pregancy I had high blood sugar.
The constant yeast infections!!!

Diabetics constantly have problems with yeast infections. Hmmmm???

I think that we all, the whole nation are victims of a vaccine injury, and it has been so slow process and progress - so that we don't even know.

Carolyn M

Lisa,

Neither rice nor potatoes are allowed on the Specific Carbohydrate Diet. In fact, no grains or any type of potatoes are allowed on that diet. This diet has been beneficial to many people, including children with autism.

While it is true that "Humans should be able to consume modest amounts of these foods without serious consequences", the fact is that children with ASD who also have gastrointestinal issues frequently CANNOT do so. Our children have more gastrointestinal issues than just dysmotility; they also may have dysbiosis, malabsorption, reflux, etc. Some may also have multiple food allergies. Avoidance of certain foods is necessary for their gastrointestinal tracts to heal.

My daughter has gluten and casein intolerance - she cannot consume foods containing these proteins without serious consequences. She has also developed a sensitivity to foods which contain high amounts of phenols. They severely upset her gastrointestinal tract. Removing gluten and casein from her diet - and reducing phenolic foods - has not adversely affected her. On the contrary, it has greatly benefitted her. We have also restricted potatoes since they upset her gastrointestinal tract, and have seen no adverse effects.

Benedetta

Lisa;
Anytime someone on here suggest something - I figure they have darn good reasons behind it.
Would you mind sharing some details of your experience about the testing of thyroid over a two week period at different times??

What did they find?

My kids have had their thyroid tested, but all comes back fine. Each test cost around 300 dollars too????

I do know that my daughter was a petite little thing up untill she was 23 and then she piled the weight on very fast, in only a couple of months. She had hers tested, and it came out fine - but that much weight in such a short time???

She had her thyroid tested and it was fine???

lisa

Benedetta,

I can certainly understand restricting carbs, but what the author of this piece is suggesting is that ASD kids with gut issues should have NO gluten, no dairy, no potatoes, and no rice. That is VERY extreme. Humans should be able to consume modest amounts of these foods without serious consequences.

What I am suggesting is that if you have to go to this extreme with your kid to see any results than you are most likely going too far in the wrong direction.

Please, check your kid's thyroid. Ask your doctor to run not one but multiple TSH screenings over a two-week period, being sure to test at different times of the day. You might be surprised what he/she finds.

Benedetta

Lisa,
You sound like my mother!
A diet with NO Rice and esp NO potatoes - was a diet made in Hell. What do you expect though from an descendant of the Irish Potato famine?
She was also a sugar holic too. She also kept a yeast infection. She was always after me to share my anti fungus medicine that I got from the gyno.

And then when my husband oxygen was very low, and I was desparate, I found that the restriction of potatoes or rice was no big deal!

After going through Atkins diet you come to understand just how many fast release carbs there are in the American diet, and you start understanding that there is really no room in any diet for food with empty calories, including white flour or potatoes.

Dr. Atkins never meant,to never ever to eat a white potato.
His said stop eating it for a couple of weeks, and then slowly add more variety still being careful with carbs. He said eat a potato ever once in a while. When I started putting more carbs back into the diet, I started understanding that whole grains and different grains -meant - more variety, more vitamins, more minerals. When I began to add rice back, I found things like different wild rice, whole grain brown rice, oat bran, wheat bran, steel cut oats, barley, bulgar wheat.
Not even the Ketogenic diet is suppose to go on forever. . Two years was the maxium--- and I see that there is new studies that a person can be on it off and on for only a few weeks at a time.
I needed to do this, so I could learn just what I thought was so healthy was really not. How could I be so blind! I don't feed my family potatoes every day --- I feed them sweet potatoes though - a lot. when I do feed them potatoes - it is few and far between - only what I raise in the garden and always with the skins.

If I eat a lot of carbs - here comes the yeast infection and I can feel pain in the back of my legs. Also my husband's oxygen levels will crash, my daughter and son become more moody.
We like our new diet and are satisfied with it.

Shannon

I think it's possible you mean Karyn SerOUssi, not Susan Seruossi.

lisa

I've honestly never heard of kids with gluten and dairy issues who also were unable to consume rice and potatoes. I can't imagine restricting anybody's diet that much -- whether they be adults or children. I am VERY skeptical of any diet that would go this far. It seems to me that if you have to eliminate this many food groups to see any benefits then you are simply barking up the wrong tree.

My own belief (based on the research as well as personal experience) is that a lot of ASD kids with gut issues suffer from slow digestion due to poor functioning thyroid glands. Mercury and other metals block iodine uptake by the thyroid gland, leading to hypothyroidism. Research is showing that many ASD kids are in fact hypothyroid, although most cases are going undetected by doctors who don't know to look for it and, in some cases, don't know HOW to test for it. (Simply doing a one-time TSH screening can be extremely misleading, as the TSH goes up and down not only from day to day but from HOUR TO HOUR). If a child is hypothyroid, eliminating the foods that are most difficult to digest (e.g. gluten and dairy) yields positive results simply because their slow-acting guts are not getting stopped up these foods. But most of these kids would probably benefit even more from thyroid medicine, as well as iodine and selenium supplements. If after all this you are still seeing serious digestive problems, then my belief is that there is something else going on. Eliminating rice and potatoes is not the long-term answer; you need to dig deeper.

Sandy Lopriore

Thanks for keeping an eye on this for us Katie. My daughter suffers with gut issues. She cannot digest casein protein. Her teachers have become believers in biomed after we put her on SCD. We have tried to modify SCD because she gets sick of the food restrictions, but when we tried to add carbs her bacteria levels went up. I will be interested in looking at this study you mentioned:

2011 Williams, et al, “Impaired Carb. Digestion and transport and mucosal dysbiosis in the intestines of ASD children with autism.”

Benedetta

My husband has acquired mitrochondrial myopathy.
When ever he wants to eat his candy bar, he tells me that the ketogenic diet is for epilepsy -(the brain) and has nothing to do with the rest of the body.

Yes, that is what he says; The brain is not part of the body, and how could I be so silly to think so. Of course my husband used to be a very smart man - an engineer- before that tetanus shot, but--- well---- maybe he is on the same wavelength with these guys here:

1.)The brain is not part of the body.
2.)If it is not in pill form it don't make no difference.

(I like that last one, because that means we can eat all the mercury we want, and it will not hurt us; as long as it is not in a tablet or capsule form).

So please ignore these pesky little studies (facts)below; because it is mostly involving just-- just--- epilespy.

*The Ketogenic diet that has been around since the 1930s.

*(The (MCT oil) medium chain triglyerides that was added to the ketogenic diet in the 1950s thus increased the percentage of those cured of epilespy.

*Those ancient books that got passed down to us - telling us it helps to starve those having fits - you know books like the Bible, or those great Greek and Roman medical doctors that started this whole mess about scientific observations and making silly statements like "First do no harm"!

*Of course there is those observations that complication occuried with any disease, even simple measles or chicken pox if people did not have enough food!

*Then darn if there is not studies done by John Hopkin's Medical University on the Modified Atkins Diet of only 15 carbs a day helped epilespy. Suggested further studies for autism, aleizheimers, all kinds of immune problem diseases?

*And then more silly studies also done by John Hopkins Medical University that epilepsy could also be helped by low glycemic diet -were as many as 30 to 60 slow released carbs could be consume?

*Even the Journal of Immunology jumps into this diet mess; here is the link!
http://www.jimmunol.org/content/184/8/4062

Metabolic Shifts in Immunity and Inflammation

Best part of what they said in this article was:
"A growing body of evidence indicates that HIF-mediated signaling pathways in parenchymal cells (e.g., epithelial cells) coordinate inflammatory responses. For instance, intestinal epithelial cells form a critical barrier to the flux of antigenic material across the gut. During episodes of inflammation, barrier function is compromised and can lead to accelerated inflammatory responses. In response to multiple metabolic insults initiated within inflammatory lesions (e.g., decreased O2 supply, increased glucose demand, decreased ATP generation, vasculitis), intestinal epithelial HIF-1α is activated (Fig. 1). Studies in mice lacking intestinal epithelial HIF-1α have "

Well I think it means that B immune cells require high amounts of glucose at certain times in their development. And wthout glucose these B cells just might not get so out of control. Well maybe they might be put back under control after a tetanus shot or even a DPT shot.

cmo

Ran across this well done interview... only 340 views so far
only a few weeks old I believe...

Katie Wright talks to Polly Tommey

http://www.youtube.com/watch?v=z6LE78wJrAo


Thanks to both of you.

STOP AUTISM NOW

Just need to "occupy" federal junk science. I'm convinced we are the ones to stop the madness. Wouldn't every american like to have $500 a week back in their pockets instead of funding this? Write your congressman folks!

Thanks again Katie - love your efforts.

Kristine

It's almost unbelievable that they would exclude children with GI problems! My severely autistic son does not have GI issues, which is rare among his classmates. Not surprising to his DAN! or me was that the GFCF (and then later the SCD) diet did not produce any improvements in his symptoms. It was definitely worth a shot since it has NO risks.

The autism-diet research problem is really just the tip of the iceberg if you ask me. ALL kids need healthier diets and by that I don't mean they "eat their 5 fruits and veggies" or whatever the current USDA (big Ag) recommendations are. Eliminate processed foods. Get agricultural products (meat, dairy, and produce) from quality, organic, non-GMO sources. Low on the grains. No sugar. Certainly no food dyes or chemicals (MSG). Forget about autism- we ALL need to eat like this. This is not CAM (I also find it incredibly infuriating that dietary intervention would be considered CAM- please, it's called preventative medicine but they stole that word to use for their precious vaccines). But just as much as we are all witness to the pharmaceutical companies influence on government orgs like CDC or FDA, the exact same thing happens with food from big Agriculture and big Food manufacturers. Read this article, it's striking the comparisons:
http://www.grist.org/food/2011-11-02-confessions-of-a-big-food-executive

Enoch

One diet that seems to be overlooked is the ketogenic diet. It has been used for nearly a century for refractory epilepsy, and studies indicate that it can improve cognitive function, social interaction, sleep and behavior in children with refractory epilepsy. Autism and epilepsy have a relatively high co-morbidity. Of course such a diet should not be done without medical supervision.

The abstract of the only study for treatment of autism with the ketogenic diet that I can find is below. The 4 weeks on, and 2 weeks off seems a bit strange, and a control group would have improved the study.

Abstract:

J Child Neurol. 2003 Feb;18(2):113-8.
Application of a ketogenic diet in children with autistic behavior: pilot study.
Evangeliou A, Vlachonikolis I, Mihailidou H, Spilioti M, Skarpalezou A, Makaronas N, Prokopiou A, Christodoulou P, Liapi-Adamidou G, Helidonis E, Sbyrakis S, Smeitink J.
SourceDepartment of Paediatrics, Medical School, University of Crete, Crete, Greece. evangeli@med.uoc.gr

Abstract
A pilot prospective follow-up study of the role of the ketogenic diet was carried out on 30 children, aged between 4 and 10 years, with autistic behavior. The diet was applied for 6 months, with continuous administration for 4 weeks, interrupted by 2-week diet-free intervals. Seven patients could not tolerate the diet, whereas five other patients adhered to the diet for 1 to 2 months and then discontinued it. Of the remaining group who adhered to the diet, 18 of 30 children (60%), improvement was recorded in several parameters and in accordance with the Childhood Autism Rating Scale. Significant improvement (> 12 units of the Childhood Autism Rating Scale) was recorded in two patients (pre-Scale: 35.00 +/- 1.41[mean +/- SD]), average improvement (> 8-12 units) in eight patients (pre-Scale: 41.88 +/- 3.14[mean +/- SD]), and minor improvement (2-8 units) in eight patients (pre-Scale: 45.25 +/- 2.76 [mean +/- SD]). Although these data are very preliminary, there is some evidence that the ketogenic diet may be used in autistic behavior as an additional or alternative therapy.

PMID:12693778[PubMed - indexed for MEDLINE]


Jeannette Bishop

Thank you for compiling the above research list and shining the light on the quality of ATN dietary research. I'm sure both information will be helpful!

pass the popcorn

"Seroussi had lobbied for longer trials and the removal of processed food and artificial flavorings and colorings from the study."

So basically, Hyman tested a diet that no autism parent in the real world implements.

Jeff C

It's hard to escape the conclusion these studies are designed to obfuscate. This entire vaccine link could be settled once and for all with the vax vs. unvax study, yet those controlling the purse strings refuse to fund it. There is a reason for that; they know what they will find. The autism epidemic has been now raging for twenty years. A bunch of suburban parents without medical training have been able to piece together the cause, does anyone really believe the medical establishment doesn’t understand it? Of course they do. They don’t care; their only interest is in preserving the schedule.

Why would they design dietary effectiveness studies that exclude ASD kids with gut dysfunction? Does anyone really believe they are that clueless? A much more likely explanation is that the studies are designed to find nothing, even if something exists. It’s a time-honored tradition we’ve seen before with phony placebos (vaccine safety studies) or tainted control groups (Simpsonwood and thimerisol). I have tremendous admiration for Katie, but this reminds me of Lucy and Charlie Brown with the football. They don’t have good intent, they aren’t simply misguided or misinformed, they aren’t trying to help us - they are trying to deceive us.

So why would they try to discredit dietary intervention? One reason might be that those who advocate dietary intervention also usually promote a vaccine link. It could be an attempt discredit the movement as a whole. A more likely explanation is that they know what causes the gut dysfunction. It’s most likely an autoimmune attack against the brush border of the small intestine, analogous to celiac disease. They probably understand this and realize it can’t be dismissed as an acceptable cost of protecting the greater good. As such, they need to discredit the entire notion.

This will only be solved by scientifically-minded and motivated parents doing their own research. Science as an institution has been hopelessly corrupted.

wondering why

Also,,,,,,,, does her protocol require that all traces of ingredients be removed from diet. I've met a lot of people who try the diet, but don't remove the traces of gluten, casein, soy, etc. Then they just claim it didn't work even though they didn't do it right. I feel so sorry for kids who don't get a chance to eat a clean diet before the decision is made to nix it. So sad... I know it doesn't help all kids, but it helps a lot,, and for some... that's all it takes.

wondering why

Well how do we get her fired? Her work is inadaquate.... Occupy her bosses and get the right peeps on duty.

Shell Tzorfas

Hi Katie, I am unaware of ASD kids who do not have a gastrointestinal issue, immune dysfunction or food or chemical sensitivity and or allergies. I agree that this supposed research is "Fruitless and Flawed." It is more junk science.Kids are diagnosed with a bunch of different things on the same day with the same symptoms depending on which doctor, town' or clinic. Sometimes it is political depending on whether the public school has an Autism program or Multiple Disabilities program. Lately I have not seen one child correctly diagnosed in northern NJ. Autistic? Turned out to be Dyslexic. Learning disabled turned out to be ASD. The new pattern? Most ASD kids are now diagnosed Autistic and ADHD when just 5 years ago they were very different and separate. So which kids did Dr Hyman experiment on???? Shell of Specialized Tutoring/Learning Assessments on FB and, "Recovering Autism and ADHD, " on Youtube. Marci Magazine, summer 2011, "Childhood Has Become A Diagnosis Game," published by HolisticMentorshipNetwork...Thanks

Son in Recovery

Thanks for another great article Katie exposing the flaws with their studies. We took my non-verbal son off of wheat and eight days later he talked. Everyone told me it was a "miracle" - this was no miracle... it was Good Science! Last week we celebrated our 4th year into the recovery process and our second year mainstreamed. I was on an airplane earlier this week and just my luck, sat next to someone that works for the NIH. It was very uncomfortable for me - to not want to bend their ear... tell them they need to listen to the doctors recovering our kids. Alas, I referred to my son's toxic burden on his body and how every family should get the opportunity to have HBOT treatments. She was very surprised - "It worked???" I told her yes. I also told her that my son was an immediate responder to the diet to which she gave me a scoffy smile. It was at this point I put on my I-Pod and didn't talk with her the remaining of the flight. I am NOT crazy - I have found that I cannot eat wheat either and am missing the enzyme to digest it. If I do get some wheat by accident I have bad brain fog that lasts for hours. Continue to give us those scoffy smiles.... we will keep on keeping on with our "miracles"!

A vaxxed vs unvaxxed study is the only thing we need spend tax dollars on

...more research needed = more tax dollars needed = scientists on welfare. I think autism research is a scientific entitlement program.

Thanks, Katie for exposing this.

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