Tuesday, December 18, 2007

Specific Carbohydrate Diet-Gut Issues in Autism

Of the many issues affecting Autistic individuals none is more prevalent then the gut issues. In my son's case it was diagnosed as malabsoption. I was given this diagnosis when he was five and sent home with no information that could help him.

I had an immune panel done and found out he had an Immunoglobin A deficiency and high inmunoglobin E. I took the results to a gastroenterologist who told me that due to his high IgE could not have any dairy and that his immune deficiency made him prone to gastrointestinal infections.

I remember that I took him off milk and cereals. That diet change, stopped the chronic diarrhea,which he had suffered with, since his first birthday. I thought that would be the end of that, but no. He then developed constipation, which caused him a lot of pain.

For eight years my Mickie woke up during the night, giggling, crying screaming or running through the house. During the last three years or so, he has slept very little. He could not lay flat on the bed, but slept sitting up. To me this was the most troublesome part of his issues.

He stimmed constantly and had horrible tantrums or meltdowns.

While networking with other parents I learned about a special diet called SCD diet or Specific Carbohydrate Diet. This diet is described in detail in the book "Breaking The Vicious Cycle" Intestinal Health Through Diet, by Elaine Gottschall. The reason behind this diet is simple. It is supposed to starve the yeast in the stomach, by depriving it of fermentable carbohydrates.

I heard from other parents of the benefits of this diet had brought to their autistic children's health. I decided to implement the diet with Mickie about one month ago. At about two days into the diet, while I was dressing him, he gave me a spontaneous hug. I remember just staying really still. Up to that point this kind of behavior meant that he was going to pull my hair or tug at my clothes and try to hurt me, but his big sister that could see his face said.....___It's Okay mom, he's smiling. I think he just wants a hug. So I hugged him back and proceeded to dress him once more, then he did it again.

The last time Mickie gave me hug was so long ago, I had forgotten how it felt.

A few more days went by and he stopped stimming, seemed more aware of his surroundings, started to notice our pets and even attempted to talk. By the 15Th day he was sleeping through the night. He was no longer sitting up, but was laying flat on the bed.

I have not seen change like this in him since I took him off Casein and Gluten five years ago. Slowly but surely.........

www.breakingtheviciouscycle.info

19 comments:

ANB said...

What is the evidence that kids with autism have GI issues at a rate significantly greater than NT kids?

Zurama said...

Look up the British Medical Journal, Lancet, The American Journal of Gastroenterology (Wakefield) 95:2285-2295. It demonstrates conclusively that serious intestinal pathology was found in more that half of autistic patients as opposed to only 10% of children without autism.

Hovarth, K., 1999. Gastrointestinal abnormalities in children with autistic disorder. Journal of Pediatrics 135:559-63

Ashwood, P., S.H. Murch, A. Anthony., A. A. Pellicer, F. Torrente, M.A. Thomson, J.A. Walker-Smith, and AJ. Wakefield. 2003. Intestinal Lymphocyte populations in children with regressive autism: Evidence for extensive mucosal immunopathology. Journal of Clinical immunology 23(6):504-517
Buie, T., G. Winter and R. Kushak. 2002.
J.O. Hunter. 1991.
And so on and so fouth. The list goes on......

ANB said...

You may have misread my question. I'm asking if kids with autism have GI issues more often than NT (neurotypical) kids. The Horvath paper you cited looked at 38 kids with both autism and GI symptoms. That's not really relevant to my question, now is it? ;-)

The Wakefield study has never been replicated, and has serious methodological problems. What's more, one of the researchers, Dr. Murch, recently lost a $1 million lawsuit in connections with a botched colonoscopy. Dr. Murch poked 12 holes in the kids intestine. Wakefield, of course, fled the UK in disgrace several years ago before moving to Texas to start up Thoughtful House.

The paper was explained and criticized by Dr. Thomas McDonald on day four of the Hazelhurst vaccine case. Here's the trial transcript:

ftp://autism.uscfc.uscourts.gov/autism/hazlehurst/transcripts/DAY04.pdf

McDonald's testimony starts on page 50, and he gets to the Ashwood/Wakefield paper on page 98 He says the paper's conclusions about Crohn's disease and "autistic enterocolitis" are not biologically plausible:

"Crohn's disease is a very severe lifelong condition of extensive mucosal inflammation, and it is not biologically plausible for Crohn's disease patients who get severe inflammation and children with so-called autistic enterocolitis who by Wakefield and his colleagues' own admission is a mild and subtle disease to have the same results. It is just not biologically plausible." (p 102)

To say that Wakefield, Horvath, or anyone else has conclusively proven a link between autism and GI symptoms is a bit of a stretch. The authors of this 2004 scientific review of papers agree:

Gastrointestinal factors in autistic disorder: a critical review
Erickson CA, Stigler KA, Corkins MR, Posey DJ, Fitzgerald JF, McDougle CJ.

Department of Psychiatry, Indiana University School of Medicine, Indianapolis 46202-4800, USA.

Interest in the gastrointestinal (GI) factors of autistic disorder (autism) has developed from descriptions of symptoms such as constipation and diarrhea in autistic children and advanced towards more detailed studies of GI histopathology and treatment modalities. This review attempts to critically and comprehensively analyze the literature as it applies to all aspects of GI factors in autism, including discussion of symptoms, pathology, nutrition, and treatment. While much literature is available on this topic, a dearth* of rigorous study was found to validate GI factors specific to children with autism.

PMID: 16267642 [PubMed - indexed for MEDLINE]

* scarcity

lindaweino said...

Zurama,

Thanks for sharing this with the group. I'm so happy this is helping your child. As a mother to mercury poisoned children you want to help your children feel better. I don't know what ANB, Ken Reibel wants, he needs to go back to Florida and see if he can get his deceased father in laws money so he can stop earning money consulting for pharma. He claims to have a child on the spectrum but have seen no evidence of that. He only serves as the voice of those who did this to our kids. Great mom, keep up the fight for our kids!

Zurama L. Johnston said...

Thank you. I will keep on.

EFFIIIMD said...

ANB,

H. Pylori infection as a cause of gastric ulcers was not biologically plausible in the minds of nearly all MDs when the connection was first made, the idea guys behind this won a Nobel prize. They obviously didn't have to fight anything more than tradition and still were laughed at in the beginning. Marshall and Warren were even unlikely in their positions in medicine to persevere on this issue as Marshall was an intern-not even out of medical school by more than a year and Warren was not a treating MD but rather an astute diagnostician-A PATHOLOGIST. Imagine what all those knowing gastroenterologists thought of these guys-"no credibility, not possible," sound familiar?

I am confident some new tweaks on molecular imaging will come around soon for non-invasive reinvestigations of the gut-autism theory, then some radiologists will end up figuring this out in a much safer and palatable way for you and others who deny the plausibility. Usually when politically contentious science comes out like that it takes another decade to really figure the whole story (delays increasing with the degree of paradigm disruption occurring and the economic stakes at hand in this one are huge).

Its not implausible for live attenuated viral-vaccine infections to become chronically seated. Great example of this has occurred in cattle with the history of mucousal disease vaccination-just ask a smart older vet about that one.

Here's another plausibility factor which has been understudied in humans and yet again, you have inspired a new research question in me that others may be able to work on-thanks!

If a 13 month old boy gets an MMR and begins shedding the live virus particles in the home (stool, respiratory secretions,etc) while his pregnant mother's fetus is in the first trimester and she ends up with even a mild transient viremia of weakened measles virus which crosses the placenta, it would only take a couple of virus particles to settle into the right immunologic sequestered zone of early thymus tissues to induce a major problem. Once a few of the viral proteins are expressed in the otherwise sequestered thymic tissues the developing immune system will go through its selection process of determining "self" antigens and these viral proteins will now be considered as self proteins. SO NOW THERE WILL NEVER BE AN IMMUNE SYSTEM RESPONSE TO MEASLES. Thus, the subsequently administered attenuated virus has freedom to set up shop only to be kept in check by the NK cells and completely invisible to the specific arm of the immune system the T and B cells. Now add that rubella and mumps may also be in the mix in fetal life exposure and in early life vaccination, they might also play a bit of a dysfunctional role too. Most of the cell population of the immune system lies in the gut, measles and maybe some mumps virions may set up there in a few kids.
MORE THAN PLAUSIBLE-LETS DO SOME RESEARCH ON THAT; GOT ANY DEEP POCKETS FOR ME TO TAP TO GET THAT DONE?

Thanks for the docket link, I think I'll inform the plaintiff's lawyers that plausibility is easily deniable in those lacking insight and creativity. Isn't this the "vaccine" court that is set up to help take care of the inevitable sacrificial lambs that would result as casualties of mass vaccinations-seems like a busy parent with a disabled child MIGHT have a hard time getting through this process, its as if there are never ill effects of vaccines the way you write.
By the way our children's various mild to slightly disturbing vaccine reactions were never reported to VAERS as continues to be the case in so many instances-so still those "great" studies are full of gaping holes.

If pediatricians were as entrenched in radiology screening of disease as the vaccine companies are in prevention by overvaccination and inappropriately early vaccinations, we would CT every kid head to toe every year (trust me I really not in it for the money, kids really need one every year). THINK OF ALL THE DISEASES WE WOULD CATCH EARLY, LIKE LYMPHOMA WHICH KILLS MORE KIDS THAN HEP B EVER DID IF WE DID THIS. Such mass CT screening would also lower the price of this live saving screening paradigm and protect us from our radiologists all leaving to live in Europe and Australia since they will still have lots of work to do here, and just in case any harm came out of this we would indemnify all US radiologists from lawsuits in any screening imaging program-mammography would be included and the missed cancers and contrast reaction sufferers who die can go to that federal x-ray court for compensation. And, don't let anyone tell you lymphoma or any other cancer has any relationship to radiation exposures or vaccines-the lymphatic tissues are radiorestitant and never succomb to latent chronic lymphotophic viral infections . . . RIIIGGGHT.

Edward F. Fogarty, MD
Chairman of Radiology,
University of North Dakota

PS: Good luck with the "noise" cover on the signal in these connections,
I find virtual needles in visual haystacks everyday for a living; this autism-vaccine connection is like a 3mm DCIS lesion on a mammogram, not obvious, but visible to those who are vigilant.

HCN said...

Dr. Fogarty,

The MMR has been used in the USA since 1971. Plus it has never contained thimerosal (can you guys make up your mind, was it thimerosal or the MMR that causes autism?). Where are all the forty year old autistics with gut problems? How does your little theory about MMR work if the child is the firstborn?

Why is it that there seemed to be a problem with only AFTER it was approved for use in the UK... and only after a lawyer paid a gastrointerologist to come up with specific "research" results?

I bet if Richard Barr had convinced a dermatologist to do research to support the lawsuit that eczema would be the symptom of interest in autistic kids.

The VAERS database is not a reliable source for real evidence. The reports to VAERS increase when you have lawyers with websites like "autismfraud", who actually scan support forums to drum up business:
http://onibasu.com/archives/am/33645.html

Kathleen Seidel said...

lindaweino wrote:
"I don't know what ANB, Ken Reibel wants, he needs to go back to Florida and see if he can get his deceased father in laws money so he can stop earning money consulting for pharma."

Really, Mrs. Weinmaster. How incredibly malicious of you. And omniscient, too -- that is, if you really have succeeded in ascertaining the sources of ANB's income, and the circumstances of a probate case that is completely unrelated to the subject under discussion.

If you are trying to create the impression that you are capable of participating in a civilized exchange about significant issues, you had better rethink your strategy.

ANB said...

And how incredibly reckless of KOMU to allow that comment. Not surprising. Just reckless. Mrs. Weinmaster makes claims that she can't defend, so she resorts to personal attacks. And KOMU accommodates her. Hard to understand.

Lindaweino said...

Kathleen,

I guess Ken can't take his own medicine. Ken is the one that can't carry on a civil discussion on this blog. His comments have been arrogant, condescending, degrading, nit picking and obviously part of the problem that caused a generation of children to be poisoned with mercury for a measly $4.00 in added profits. Who talks about a big D or little d for MD or scientist? Belittles the state of Missouri? The point I was making indirectly, was that I know his identity and that he works for pharma. Posting is not my job! Ken continues to hide behind 4 or 5 different sets of initials and names to remain anonymous. Why Ken? What are you hiding? My hope was that he could quit his job of covering up the biggest tragedy this country has ever witnessed. He has nothing constructive to add to this series. I never criticize parents for looking for interventions to make their child's life better. Most parents with children on the spectrum are broken hearted and seeking answers. Why do you harass caring parents, students and journalists of MU researching and seeking the truth, brilliant medical doctors and scientist with outstanding credentials that have completed hundreds and thousands of hours of research? They are willing to put their professional reputations and integrity on the line to help solve this issue. Their thank you is hearing the celebrations of moms and dads when their children make small gains. They care about this country and the impact a generation of mercury poisoned children cause. They are brave and make great sacrifices to try to make these children's lives better. As you know in your business if you go against the grain you lose. You have to be confident, secure and positive of your beliefs to go against your peers. I didn't care what caused my sons medical issues, I just want the truth, which I found is mercury poisoning. We all agree with the American Academy of Pediatrics that mercury in all forms is toxic and should be eliminated. Since it is so toxic, a reasonable, truthful person would assume there is risk of severe damage and neuro developmental disorders. Ken has to live with what he does for a living. Maybe with the inheritance he could stop earning blood money from the mistakes of Pharma. I have devoted my life to children's issues because of my own children and because children do not have a voice. Ken, I was not making a personal attack just stating facts. I think it is very unfortunate that a family is torn up over your families inheritance and I sincerely apologize if I added to your pain.

Kathleen Seidel said...

lindaweino wrote:
"[ANB] is the one that can't carry on a civil discussion on this blog. His comments have been arrogant, condescending, degrading, nit picking..."

I just reviewed every post on this blog that includes comments. Very few comments by anyone could be fairly described as "arrogant," "condescending," "degrading," or "nit picking." Amy Carson's reference to me as someone who "creeps out from under rocks" to "vomit garbage" comes close. So does Dr. Fogarty's reference to Dr. Miles as a "ninny." But for these instances, and but for your own occasional accusations that people who disagree with you are paid agents of a nefarious conspiracy to poison children and to cover up the crime and its consequences, the general tone of conversation here has been fairly reasonable.

"Who talks about a big D or little d for MD or scientist?"

I do. It is unacceptable for a journalist to misrepresent the professional credentials of an interviewee, especially an interviewee who purports to offer "expert" opinions on medical matters.

"The point I was making indirectly, was that I know his identity and that he works for pharma... My hope was that he could quit his job of covering up the biggest tragedy this country has ever witnessed."

Is that why you also attempted to publish ANB's spouse's name and their home telephone number in another comment (which Ashley, to her credit, did not approve)? What did you hope to accomplish by doing this? Do you really think that this was a civil, reasonable thing to do?

"Posting is not my job!"

How can you be so sure that it is anyone else's? Here and on the KOMU videos, you express a lot of assumptions about people's motivations, professional obligations and personal finances.

"[ANB] continues to hide behind 4 or 5 different sets of initials and names to remain anonymous."

As a matter of fact, ANB has openly acknowledged using different Blogger ID's. Many people have different Blogger ID's that they use for different purposes. And people don't always log in when they leave comments.

"He has nothing constructive to add to this series."

I disagree. For instance, ANB's post on this blog, The Myth of the Autism Epidemic, attracted the greatest number of comments of any post on this blog. I call that a constructive addition.

"I never criticize parents for looking for interventions to make their child's life better."

Neither has ANB or any other commenter here as far as I have seen. However, I have seen legitimate, civilized criticisms leveled against those who promote and market speculation as if it were science.

"Why do you harass caring parents, students and journalists of MU researching and seeking the truth, brilliant medical doctors and scientist with outstanding credentials that have completed hundreds and thousands of hours of research?"

It is not "harassment" to ask probing questions and to challenge unsupported statements. "Caring parents" deserve to become familiar with the full range of evidence and opinions on autism causation and treatment. The "students and journalists of MU" have a lot to learn about autism, about accuracy, and about the difference between journalism and stenography (as ANB has very aptly put it). The "brilliant medical doctors and scientists" upon whom you rely have made some very debatable assertions about autism and about vaccines. If they are so brilliant, they should also be capable of responding to criticism. A person can't earn a doctorate without demonstrating that ability.

"They care about this country... They are brave and make great sacrifices..."

So do many other people who happen to disagree with you, and with them.

"I didn't care what caused my sons medical issues, I just want the truth, which I found is mercury poisoning."

It seems that you do care, a great deal. Your "truth," however, is arguable.

"Since it [mercury] is so toxic, a reasonable, truthful person would assume there is risk of severe damage and neuro developmental disorders."

Do you mean to say that people who disagree with you on the subject of autism causation are neither reasonable nor truthful?

"[ANB] has to live with what he does for a living. Maybe with the inheritance he could stop earning blood money from the mistakes of Pharma... [ANB], I was not making a personal attack just stating facts. I think it is very unfortunate that a family is torn up over your families inheritance and I sincerely apologize if I added to your pain."

So, your "statement of facts" was not a personal attack, and was motivated by compassion? Who are you trying to kid? How much more vicious can you get? Your continued references to a private legal matter that has absolutely nothing to do with the subject under discussion go quite beyond the pale.

ANB said...

Linda, I happen to know that you are the one who works for pharma, specifically Eli Lilly. You are posing as an ignorant, classless shrew in order to further discredit the anti-science crowd that wants to leave a generation of children defenseless against whooping cough, measles, diptheria, and dozens of other dangerous diseases. And while I agree with your agenda, I do take exception to your methods. What are you hiding from? Why not just argue your case on scientific merits, instead of assuming the personna of a ninny? I see you also studied theatre arts at Kansas State University in the 90s, so perhaps this latest acting assignment fulfills you dream of a career on stage.

Anonymous said...

Ken or ANB or anonymous or Kathleen-whoever, I am sorry about the unclear antecedent-it seems unclear as to whom to refer to here. I was referring to YOU as a ninnie.

"I wish I had time to debate the ninnies that keep denying the need to protect the vulnerable by screening them simply because it would appear to be an admission of guilt."

ANYONE WHO TELLS ME THAT WE DON'T NEED TO PROTECT VULNERABLE POPULATIONS FROM IAGTROGENESIS IS A NINNIE. ANB has not once agreed that my VERY SCIENTIFIC APPROACH TO THIS ISSUE should be done-if you are "MR SCIENCE" tell me why you aren't lauding the scientific approach I keep putting up on these boards?

Seems inconsistent that the FDA would back box gadolinium contrast agents for the renally-impaired when we radiologists had used it "safely" for years by default to iodinated contrast in the renally impaired. It was black-boxed after only a couple dozen cases of NSF, but somehow other agents are not black-boxed with similar small metal-intolerant vulnerable populations:
http://www.fda.gov/Cder/drug/advisory/gadolinium_agents.htm

New vaccine information sheets curiously now mention something about mercury "allergies" as a screening question. Maybe we should turn this into something more productive, a town hall meeting type of debate and forum in Columbia; I'll debate anyone on the fact that the best science to determine these relationships is still needing to be done, and the common sensical nature of the approach to vaccine protocol variation with arms of thimerosal-free and thimerosal-containing vaccines to tease out the susceptible population stands on its own merits, maybe Dr. Miles would pursue that in a dispassionate fashion because that is what is needed now. To say one would not pursue that and yet also say that there is conclusive evidence that there is no connection between autism and vaccines (with or without thimerosal) is to be a disingenous scientist. ANB, you certainly appear to be interested in the best science on this issue, why not just say uncle here and admit that I am right. Really it would end all thimerosal product liabilities for good on this issue if that kind of controlled science shows no association.

Now that is science. Until then we can only "favor" rejecting an association. NOTHING WILL BE CONCLUSIVE UNTIL THIS IS DONE.

ANB said...

If you look for ghosts, you will find them. There is no credible evidence that vaccines cause autism, yet you want to prove that they don't. Fine. I applaud your proposed study. I am second to none in my admiration of your diligence, nay, perseveration, on this matter. Furthermore, I find your need for recognition and acceptance from internet strangers quite touching. You are living proof that not all scientists lack humility.

So by all means, round up millions of kids, give them vaccines with and without thimerosal depending on their birthdays. Make sure you double blind the study, because there's lots of ninnies out there who won't understand that you are only trying to protect their children from a threat for which there is no evidence. Unless you're looking for ghosts.

Kathleen Seidel said...

Dr. Fogarty wrote:
"Ken or ANB or anonymous or Kathleen -- whoever, I am sorry about the unclear antecedent -- it seems unclear as to whom to refer to here. I was referring to YOU as a ninnie... ANYONE WHO TELLS ME THAT WE DON'T NEED TO PROTECT VULNERABLE POPULATIONS FROM IAGTROGENESIS IS A NINNIE."

That's odd. I have never told you that we don't need to protect vulnerable populations from iatrogenesis. In fact, if I recall correctly, the only direct exchange you and I have had on this blog pertained to whether or not Boyd Haley should be identified as "a doctor." And on this particular thread, my comments have been limited to addressing Mrs. Weinmaster's histrionic allegations and her reprehensible, juvenile debate tactics.

"ANB has not once agreed that my VERY SCIENTIFIC APPROACH TO THIS ISSUE should be done -- if you are "MR SCIENCE" tell me why you aren't lauding the scientific approach I keep putting up on these boards? ...why not just say uncle here and admit that I am right."

Since you frequently alternate between all-caps and regular type, you are probably already aware that all-caps corresponds to a raised voice. Do you realize that your frequent use of all-caps makes you appear chronically angry and irrational? Are you yelling because not everyone is "lauding the scientific approach [you] keep putting up on these boards"? How much external validation do you need? How many ideological opponents must concede defeat and bow down at the feet of the All-Knowing Chairman of the Department of Radiology of the University of North Dakota Medical School, before you'll conduct the research you believe needs to be done? Why don't you write up a proposal, run it past some of your colleagues (maybe even a few of the pediatricians whom you hold in such contempt), find yourself a sponsor, obtain approval from the UND IRB, and get on with it, instead of repetitiously grandstanding before the largely-lay participants in discussions on this blog?

EFFIIIMD said...

You are saying thimerosal is risk free? Put it in writing ANB.

AutismNewsBeat said...

No, I'm saying there's no evidence that thimerosal, as once administered, causes autism. Dr. Mark Geier, MD, admitted as much to a judge in 2004. Of course, when he's not under oath, Geier tells his patients quite the opposite. I know you don't respect me for not swooning over your Titer Meter® study, but don't I at least get props for taking a dim view of medical fraud and child abuse?

FOGARTY said...

This isn't about Geier, its about transparency in governance and doing the greatest good with the least harm.

AutismNewsBeat said...

Accountability for me but not for thee? No thanks.