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Canadian Karen

Please Help Me Out Here.....

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I am in a debate on a parenting forum regarding the gluten-free/CF diet and it's affects on autism. I have one person who calls this diet a fraud diet and another person who keeps repeating this as their argument:

You have CELIAC not AUTISM. No one has said the GCFC diet won't work for those with CELIAC. I have posted information -- quite a bit and not Wikipedia information and always giving credit where credit was due contrary to some people's claims -- regarding diets (including the GCFC diet) and AUTISM.

The GCFC diet is NOT effective when dealing with AUTISM and can actually be harmful to an autistic's health.

How hard is that to understand?

CELIAC -- GCFC diet good.

AUTISM -- GCFC diet can be dangerous.

And this is when the GCFC diet is followed appropriately.

Obviously, if you can't cure or lessen red hair or blue eyes or size 11 feet with a diet, you can't cure or lessen autism with a diet.

These people are spewing crap to these parents who are asking legitimate questions regarding the diet and wanting to try it. All this one person keeps on saying is "autism is genetic - you can't change your eye colour or size 11 feet with diet, and you can't change autism with diet"

Sigh......... :(

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Oh, how awful.

#1) What proof are they providing as to the "dangers" of the GFCG diet? What do they think is in milk and wheat that an autistic person needs that non-autistics don't need?

#2) What about those who report miraculous improvements in their autistic children (or in their autistic selves) on the Gluten-free Casein-free diet? Does this person think that they are lying?

#3) What about Karyn Serroussi's research, proving the opioid effects of gluten and casein on autistic people?

Unless this person is providing legitimate proof that a Gluten-free Casein-free diet can cause harm to anyone, let alone an autistic person, what he is saying is very dangerous...

You might pm Ursa, if you haven't already--I'm sure she will not only have much to say, but will provide all kinds of irrefutable PROOF.

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Some people just can't be convinced. This person has it in her/his head that their kid can't be helped and that is something that he/she needs to overcome. All you can do is offer the information and they have to take it or leave it. I know you want to help the child, yet until the parent wants to accept the info, you are helpless, sad, but true. Just keep putting the info out and hope he/she finally makes the connection one day.

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Guest Happynwgal2
I am in a debate on a parenting forum regarding the gluten-free/CF diet and it's affects on autism. I have one person who calls this diet a fraud diet and another person who keeps repeating this as their argument:

These people are spewing crap to these parents who are asking legitimate questions regarding the diet and wanting to try it. All this one person keeps on saying is "autism is genetic - you can't change your eye colour or size 11 feet with diet, and you can't change autism with diet"

Sigh......... :(

You just have to excuse people for their self imposed ignorance. Then you need to ask yourself what this person is getting out of his or her child being autistic, but refusing to try EVERYTHING to help improve his or her child's autism. Some people are simply too lazy or too overwhelmed to look at possible solutions that means THEY have to do more to help their kids. The latter is understandable and I feel for that person; the former may mean that the parent is getting something out of having a sick child, as sick as that sounds.

My oldest nephew is autistic, and a Celiac. He is able to drive and hold on to a simple part time job - he is now 30, and is one of the kindest people you will ever meet. I am 100 % convinced that had he not gone on a gluten free diet, he would have been much worse. He is intelligent, pleasant to be around, and you'd be hard pressed to catch on to the fact that he is indeed autistic. He IS quiet, and he does not have many friends, but relies a lot on his family for friendship, but he is able to function much better than had he still been eating gluten.

More and more medical providers are catching on to the link between autism and gluten - at least for some autistic patients. Thus for a person to say that autism is like having blue eyes, i.e. can not be changed, is self imposed ignorance.

Good luck dealing with this person! Sometimes the best thing to do with challenging people like that is simply to ignore them, and hope that some day the light will be turned on upstairs... :P

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All this one person keeps on saying is "autism is genetic - you can't change your eye colour or size 11 feet with diet, and you can't change autism with diet"

Sigh......... :(

Wretched. :angry:

You know what...tell her that CELIAC is genetic also and can be managed, treated, and symptoms can be reversed and "cured" with strict adherence to gluten-free diet.

I can't stand idiots like that parent.......it's one thing to assert that, for example, that the Gluten-free Casein-free diet didn't help one's child - it's another to say the diet is dangerous????? WTH???

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Perhaps this link will help - it addresses the misconception that Gluten-free Casein-free diet can cause harm to an autistic child and has to do with going "cold turkey etc.

A bit from the site: it is an article posted by the autism research group.

http://www.autism.org/leakygut.html

At the present time, we do not know why the gluten-/ casein-free diet helps many autistic individuals. One popular theory is that when gluten and casein are broken down into peptides, they may pass through imperfections in the intestinal tract. These peptides are termed gliadinomorphin (breakdown of the gluten protein) and casomorphin (breakdown of the casein protein). Both peptides act like morphine in the body. They can also pass through the blood-brain barrier and have a negative impact on brain development.

As stated earlier, the most helpful treatment for this problem is to place the child on a gluten- and/or casein-free diet. When placed on a diet, children, especially under 5 years of age, should not go

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Hello CanadianKaren

I just selected "search" (darker grey bar above our posts), selected "More search options", selected the whole "Gluten Free....Forum" and typed the words "autism celiac" selecting "most relevant" and got quite a lot, including your posts in earlier months, but there are also quite a few links and some statements of direct experience with autism and a gluten free diet.

Hope that adds arrows to your quiver.

Centa

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I'm not very knowledgeable in the CF arena, but I fail to see how a gluten-free diet could be bad for anyone. I mean, as long as you know what vitamins to compensate for that you might be missing with gluten products, since making our house gluten-free, we've filled it with mostly healthy, whole foods. It has been a good thing for the whole family. I fail to see how that could be a dangerous eating approach for anyone, autistic, celiac, or otherwise.

I don't know enough about the casein stuff to really know---although I imagine it is just as hard to avoid as gluten when it comes to reading labels. But again, as long as the nutrients are being met and a person's diet is mostly whole foods, then how on earth could that be bad?

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To paraphrase something I read on this site last week (but can't remember where):

For those who think that what we eat has no direct effect on brain function:

Go into a bar, drink 4-5 drinks, and then see how well your brain functions.

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Has this person not seen anything on TV or in print lately about Jenny McCarthy and how she feels that the Gluten-free Casein-free diet has helped her autistic son???? Also I really can not see why it would be harmful for one to go on this diet. I really think this person is misunderstanding. Sigh!

Virginia

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I looked at the research studies on this site about autism and celiac. Here's one whose conclusion is: "when the intestinal wall is not healthy and the brain is vulnerable, the brain is affected directly". To use this argument, you would be making the assumption that someone without celiac is still being affected by gluten and casein, which I think most here would agree with but I don't have any medical studies showing that. Maybe just the number of undiagnosed celiacs would mean a lot of autistic people are celiac and don't know it, but again, that doesn't cover non-celiac autistics.

https://www.celiac.com/st_prod.html?p_prodi...-06107572945.56

And here's another that says there's no link between celiac and autism, but this is more of if you have autism you aren't any more likely to have celiac and vice versa, but the issue you are arguing is not whether people have both diseases, but whether Gluten-free Casein-free helps for autism regardless of whether a person has celiac.

If you could find some studies about gluten's affect on the brain that might help. Especially if they study celiacs and non-celiacs.

But autism being genetic and can't be changed with diet??? Celiac is genetic and can be changed with diet so I don't think that logic holds.

I also fail to see how she has proved that Gluten-free Casein-free is harmful for autistics. I don't think eating Gluten-free Casein-free is harmful for anyone. Anyone can have a perfectly healthy diet that does not include gluten and casein - there's no nutrients in these two items that you can't get from some other food.

I would ask for her medical study references.

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They don't know for sure 100% that autism is genetic. Yes you do have your genetic camp but you also have your mercury camp, your antibiotic camp and a few other "lesser" camps.

I know you can change my Aspies world by changing his diet. Within 2 weeks of our first diet change I had many people we knew stopping me asking me what medicine we had put him on. Can you believe the shock when we said that it was only a diet change??

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I don't think there have been any 100% well done studies, but some of the empirical evidence tends to point to potential positive effects of the gluten-free/cf diet for some children

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

The use of complementary or alternative treatment approaches in children with autism spectrum disorders (ASDs) is increasing, and the most popular of such approaches are diets that eliminate either gluten or casein, or both. The popularity of these diets indicates a need for more rigorous research into their efficacy. Owing to significant methodological flaws, the currently available data are inadequate to guide treatment recommendations. The purpose of this review is to examine the available trials of gluten/casein diets in children with ASDs regarding the strength of their findings and also concerning points that may be useful in the design of future studies. Seven trials of these diets in ASD are critically reviewed; 6 of these were uncontrolled trials and 1 used a single-blind design. All reported efficacy in reducing some autism symptoms, and 2 groups of investigators also reported improvement in nonverbal cognition. Design flaws in all of the studies weaken the confidence that can be placed in their findings. Careful double-blind, placebo-controlled studies are needed to evaluate whether actual benefit undergirds the diets' popularity and to provide better guidance to clinicians and caregivers. The literature currently available suggests that diets eliminating both gluten and casein (rather than either alone) should be studied first and that outcome measures should include assessments of nonverbal cognition.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

This study tested the efficacy of a gluten-free and casein-free (Gluten-free Casein-free) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Data on autistic symptoms and urinary peptide levels were collected in the subjects' homes over the 12 weeks that they were on the diet. Group data indicated no statistically significant findings even though several parents reported improvement in their children. Although preliminary, this study demonstrates how a controlled clinical trial of the Gluten-free Casein-free diet can be conducted, and suggests directions for future research.

This is a good one:

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

The mechanisms behind autoimmune reaction to nervous system antigens in autism are not understood. We assessed the reactivity of sera from 50 autism patients and 50 healthy controls to specific peptides from gliadin and the cerebellum. A significant percentage of autism patients showed elevations in antibodies against gliadin and cerebellar peptides simultaneously. For examining cross-reaction between dietary proteins and cerebellar antigens, antibodies were prepared in rabbits, and binding of rabbit anti-gliadin, anti-cerebellar peptides, anti-MBP, anti-milk, anti-egg, anti-soy and anti-corn to either gliadin- or cerebellar-antigen-coated wells was measured. In comparison to anti-gliadin peptide binding to gliadin peptide at 100%, the reaction of anti-cerebellar peptide to gliadin peptide was 22%, whereas the binding of anti-myelin basic protein (MBP), anti-milk, anti-egg and anti-soy to gliadin was less than 10%. Further examination of rabbit anti-gliadin (EQVPLVQQ) and anti-cerebellar (EDVPLLED) 8 amino acid (AA) peptides with human serum albumin (HSA) and an unrelated peptide showed no binding, but the reaction of these antibodies with both the cerebellar and gliadin peptides was greater than 60%. This cross-reaction was further confirmed by DOT-immunoblot and inhibition studies. We conclude that a subgroup of patients with autism produce antibodies against Purkinje cells and gliadin peptides, which may be responsible for some of the neurological symptoms in autism.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Searching for a mechanism underlying autoimmunity in autism, we postulated that gliadin peptides, heat shock protein 60 (HSP-60), and streptokinase (SK) bind to different peptidases resulting in autoantibody production against these components. We assessed this hypothesis in patients with autism and in those with mixed connective tissue diseases. Associated with antigliadin and anti-HSP antibodies, children with autism and patients with autoimmune disease developed anti-dipeptidylpeptidase I (DPP I), anti-dipeptidylpeptidase IV (DPP IV [or CD26]) and anti-aminopeptidase N (CD13) autoantibodies. A significant percentage of autoimmune and autistic sera were associated with elevated immunoglobulin G (IgG), IgM, or IgA antibodies against three peptidases, gliadin, and HSP-60. These antibodies are specific, since immune absorption demonstrated that only specific antigens (e.g., DPP IV absorption of anti-DPP IV), significantly reduced IgG, IgM, and IgA antibody levels. For direct demonstration of SK, HSP-60, and gliadin peptide binding to DPP IV, microtiter wells coated with DPP IV were reacted with SK, HSP-60, and gliadin. They were then reacted with anti-DPP IV or anti-SK, anti-HSP, and antigliadin antibodies. Adding SK, HSP-60, and gliadin peptides to DPP IV resulted in 27 to 43% inhibition of the DPP IV-anti-DPP IV reaction, but DPP IV-positive peptides caused 18 to 20% enhancement of antigen-antibody reactions. We propose that (i) superantigens (e.g., SK and HSP-60) and dietary proteins (e.g., gliadin peptides) in individuals with predisposing HLA molecules bind to aminopeptidases and (ii) they induce autoantibodies to peptides and tissue antigens. Dysfunctional membrane peptidases and autoantibody production may result in neuroimmune dysregulation and autoimmunity.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Similar to many complex autoimmune diseases, genetic and environmental factors including diet, infection and xenobiotics play a critical role in the development of autism. In this study, we postulated that infectious agent antigens such as streptokinase, dietary peptides (gliadin and casein) and ethyl mercury (xenobiotic) bind to different lymphocyte receptors and tissue enzyme (DPP IV or CD26). We assessed this hypothesis first by measuring IgG, IgM and IgA antibodies against CD26, CD69, streptokinase (SK), gliadin and casein peptides and against ethyl mercury bound to human serum albumin in patients with autism. A significant percentage of children with autism developed anti-SK, anti-gliadin and casein peptides and anti-ethyl mercury antibodies, concomitant with the appearance of anti-CD26 and anti-CD69 autoantibodies. These antibodies are synthesized as a result of SK, gliadin, casein and ethyl mercury binding to CD26 and CD69, indicating that they are specific. Immune absorption demonstrated that only specific antigens, like CD26, were capable of significantly reducing serum anti-CD26 levels. However, for direct demonstration of SK, gliadin, casein and ethyl mercury to CD26 or CD69, microtiter wells were coated with CD26 or CD69 alone or in combination with SK, gliadin, casein or ethyl mercury and then reacted with enzyme labeled rabbit anti-CD26 or anti-CD69. Adding these molecules to CD26 or CD69 resulted in 28-86% inhibition of CD26 or CD69 binding to anti-CD26 or anti-CD69 antibodies. The highest % binding of these antigens or peptides to CD26 or CD69 was attributed to SK and the lowest to casein peptides. We, therefore, propose that bacterial antigens (SK), dietary peptides (gliadin, casein) and Thimerosal (ethyl mercury) in individuals with pre-disposing HLA molecules, bind to CD26 or CD69 and induce antibodies against these molecules. In conclusion, this study is apparently the first to demonstrate that dietary peptides, bacterial toxins and xenobiotics bind to lymphocyte receptors and/or tissue enzymes, resulting in autoimmune reaction in children with autism.

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Personally, I do not believe that autism is simply a genetic condition. ...there are MANY more factors involved...and most of them are not acknowledged by the medical communtity. This is why its the alternative treatments that are turning things around for these kids. Some of those treatments are mentioned in the back of McCarthy's book...and there are many more which are not mentioned.

I will spare everyone a long rant about that. :D

Karen....dont let that one parent discourage you. :)

There are plenty of other parents who dont have alot of info. on this subject who ARE interested in learning and doing whatever it takes to help their kids.

Ignore those who will attack you for trying to inform others. As bad as it sounds there are some out there who do not want to make any efforts to help their child. They would rather "accept" that their child cannot be helped and that nothing can be done about this unfortunate "genetic" condition.

McCarthy refers to those parents as the "Woe is me" type...they are not proactive and do not necessarily appreciate others efforts to find answers. Its sad but true.

I say continue to do what you're doing and know that you ARE helping some people. ;)

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Ignore those who will attack you for trying to inform others. As bad as it sounds there are some out there who do not want to make any efforts to help their child. They would rather "accept" that their child cannot be helped and that nothing can be done about this unfortunate "genetic" condition.

McCarthy refers to those parents as the "Woe is me" type...they are not proactive and do not necessarily appreciate others efforts to find answers. Its sad but true.

So true. I get attacked quite often because I choose alternative and what they call "unproven" techniques to help my child/ren. Well, I choose them because they are WORKING! It does take major effort and planning. Of course I assume since this is a celiac forum you know the effort and planning involved in just getting a gluten free child prepared for a birthday party. On top of that you have the daily speech, then the vitamins, then working with the learning glitches and so on. The rewards though are out of this world.

It sounds like I'm going to have to get McCarthy's book.

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They don't know for sure 100% that autism is genetic. Yes you do have your genetic camp but you also have your mercury camp, your antibiotic camp and a few other "lesser" camps.

The genetic camp is not necessarily exclusive of the mercury and antibiotic camps--what if the only genetics involved here are the inability to excrete mercury and antibiotics effectively?

Larry King had Holly Robinson Peet and Jenny McCarthy on CNN last night, as well as a doctor whose name I didn't catch, and I was so thrilled! The whole time, she kept saying that pediatricians don't listen to the moms, and that the Gluten-free Casein-free diet WORKS, and why isn't the CDC teaching physicians to talk to moms about it as soon as they mention any of the red flags for autism in their child's development?

She also said that if she ever has another child, she will avoid vaccines.

She was phenominal!

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She kept saying that pediatricians don't listen to the moms....

She was phenominal!

I saw it last night also and it truly was absolutely wonderful...I was so impressed by them.

Whether its gluten, Celiac, autism, mercury, bacteria, viral, fungal.....the common point that all these stories share is that there is a problem that doctors aren't listening to their patients (and/or moms), and patients/moms are being forced to take it into their own hands. Not only aren't women being listened to as a mom, but as we know re: Celiac, women aren't taken seriously when it comes to complaints. I think its great that people are finally putting it out there that the medical community isn't meeting everyone's needs.

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Of course I assume since this is a celiac forum you know the effort and planning involved in just getting a gluten free child prepared for a birthday party. On top of that you have the daily speech, then the vitamins, then working with the learning glitches and so on. The rewards though are out of this world.

You are absolutely correct. I know my daughter gets tired of me talking about food but you hit the nail on the head. The vitamins, the talks, everything. And yes, the rewards are awesome! I have a lovely, brilliant, happy child instead of a very sick one.

I think a year ago I might have rolled my eyes at someone mentioning "gluten free." In fact, I remember a time in the grocery store with my daughter when she wanted one of the Envirokidz cereals. She asked what the "gluten free" meant and I said it meant they could charge $4 for a box of cereal. Little did I know about a year later, I would be clinging to Panda Puffs with dear life!

I just can't imagine not being willing to try anything and everything that would help my child be well, even if it meant something a little unconventional or inconvenient.

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Karen,

Could you PLEASE tell that "Mister" to spell Gluten-free Casein-free correctly???????? It was driving me crazy! He/she keeps typing it as GCFC. And tell him/her that Celiacs don't have to be CF. I figure that if I get on there, they would blast me cuz I would be new and I don't have an autistic child! That "mister" person is crazy imo!

On a side note, I once heard (before I was even diagnosed w/ Celiac) that the longer a child is on gluten (that is autisitc), the more permanent damage is done to that child. So, maybe most of the kids involved in those studies were already past the "point of no return". You may want to see if you can find info on that. And bring up the Jenny McCarthy info! That person needs to quit spouting all those lies that a Gluten-free Casein-free diet is dangerous! That is just crazy. No one technically needs gluten or dairy to survive!

ptkds

OK, I originally tried to reply to your other post w/ the link to that forum, but it looks like that was deleted! I can't find it now, but I read the forum you were on, and then tried to reply!

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I saw Jenny McCarthy on Oprah a couple of weeks ago and just read her book last night! I'm glad today is a holiday since I couldn't put it down. Being 8 weeks pregnant, I wonder about my Gluten-free Casein-free diet and the impact on my unborn child...I personally feel it's better for the baby and well, had I not been gluten-free there would have been no way my fertility would have been strong enough to conceive.

When the baby is born, will I introduce gluten foods?? I doubt it, since my husband and I are both Gluten-free Casein-free so the risk of CC is too high. Anyone have any experience with this?? Also, if I breastfeed, the milk supposedly has about 20-30% casein. How do you keep a baby CF since I've read that most formulas have even higher levels of casein than breast milk. So many things to consider!

The next thing is vaccines. Although I am just embarking on my research, there seems to be a lot of research connecting vaccines and mercury to austism. However, teaching in Ontario, I know that parents need to provide immunization records in order to register for school.

Like all parents, we want to do whatever it takes to make sure our baby is as healthy as possible, but it's pretty overwhelming right now!

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Also, if I breastfeed, the milk supposedly has about 20-30% casein. How do you keep a baby CF since I've read that most formulas have even higher levels of casein than breast milk. So many things to consider!

I'd think the logical answer would be breastfeeding is best. If you have a balanced diet, your baby will be healthy from your breastmilk, even if it does have casein. It beats paying gobs of money for a special formula that is not nearly as healthy as your breastmilk. I'd venture a guess (I'm not an expert) that you wouldn't need to keep your baby CF unless a doctor said you should or if you find some reason your baby is not tolerating your breastmilk.

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Also, if I breastfeed, the milk supposedly has about 20-30% casein. How do you keep a baby CF since I've read that most formulas have even higher levels of casein than breast milk.

My understanding is that there is no problem with casein in human milk as long as the mother isn't consuming casein. It's only milk from other mammals that are the problem--cow milk is meant for baby cows, who have 3 stomachs.

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My understanding is that there is no problem with casein in human milk as long as the mother isn't consuming casein. It's only milk from other mammals that are the problem--cow milk is meant for baby cows, who have 3 stomachs.

That is right. The milk from the Mom was made specifically for that baby by the same body that made the baby. My child who was anaphylactic to animal casein tolerated mommy milk just fine as long as I wasn't consuming animal casein which I shouldn't be anyway since I am allergic.

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HI Karen

It's wonderful your trying to help.

Guess I'd still keep posting and try to ignore that person...hard as it will be when they post things that are inaccurate...like being dangerous...but maybe you could just post this link to the Larry Kind show...hope it's still up and working.

I'll delete this if it is gone now.

hang in there.........you just might reach one mom and child whose life you'll have changed.

Here are the links:

http://www.cnn.com/CNN/Programs/larry.king.live/

Judy

edit...the video is not there now........but there are other sites that it refers you to that might show some videos that would be related to other shows she was on.

just a thought. also the Oprah link might still be there.

hugs

judy

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