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GF/CF diet:  good or bad - Printable Version

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GF/CF diet:  good or bad - voiceoffreedom - 06-30-2008 09:34 PM

I want to know people's opinions on the GFCF diet.  Is it a legit medical thing?  Is it a "cure."?


RE: GF/CF diet:  good or bad - micgrace - 07-01-2008 02:08 AM

I know one person on that diet and it does work for them. They tell me consuming gluten /casein is a bit like taking a whole heap of  drugs. This person thinks it is a different disorder (food intolerance) altogether that just has similar symtoms as autistic.

My opinion. It is a cure for a food intolerance. However, there is a possibility the intolerance may provide a trigger or expand some traits. Worth a test, nothing lost.


RE: GF/CF diet:  good or bad - FeelingArranger - 07-01-2008 10:53 AM

I really think the effect of all these diets are 75% comfort issues and 25% placebo.
And the ignorant idea that if a person is more comfortable and happier than before, he is ofcourse now less autistic......

I find it ALOT easier to socialize when I'm on a proper diet, basicly more fibre and less fast carbs, and rather healthy fats(olive,raps,fish) than sugar.
Simply because I get alot more energy to focus on it.
I'm a little bit sensitive for both gluten and milk stuff, I don't feel I need to avoid them though.


RE: GF/CF diet:  good or bad - Ivar T - 07-01-2008 11:17 AM

http://03530.com/2008/03/25/special-diets-and-autism.html

In this high quality study from March they found that the usual testing for urine morphine-peptides (which should indicate food intolerance according to the opioid excess theory behind GF/CF) with HPLC equipment indicated peaks, which could be morphine peptides, but that with further testing with MALDI-TOF MS they found that the peaks did not represent morphine peptides.

Quote:
After adjusting for the amount of creatinine in the urine, which is a measure of kidney function, the researchers found no significant differences in the urinary profiles (shown by HPLC) between groups of boys with or without autism. In those cases where HPLC showed peaks in the locations at which opioid peptides might be expected to be found, further testing by mass spectrometry (MALDI-TOF) showed that these peaks did not represent opioid peptides.


I recently sent an email to NeuroZym - Norway's advocate for GF/CF and probiotics, asking if they used HPLC and MALDI-TOF, they said that the methods used to analyse the urinary profile was written on the website.

I could only find HPLC mentioned, and that the results with these "peaks" were examinated and commented by the administrative director of the organization (who happened to sign the email sent to me aswell).


RE: GF/CF diet:  good or bad - lizlipskiphdccn - 07-01-2008 08:39 PM

voiceoffreedom Wrote:
I want to know people's opinions on the GFCF diet.  Is it a legit medical thing?  Is it a "cure."?


I'm a clinical nutritionist. I've been using gluten-free/casein free/additive free/processed sugar free diets for over 20 years with children and adults with all types of medical and health issues, including autism.  I don't think that they are a cure.  But here is what I have seen:  Digestive issues often clear up completely, people's minds seem clearer, people have more energy, joint issues resolve, skin improves, people can concentrate better. This is an inexpensive and simple thing to try.  Recently I was working with a 7 year old girl on the spectrum.  Within two weeks her behavior had remarkably improved.  Her parents and teacher were thrilled and she continues with the diet.  The Autism Research Institute provides a place for people to post results for virtually every intervention they try (drugs, acupuncture, diet, behavioral therapies, sensory therapy, etc.)  65% of 2000 people report that GF/CF diet is useful.  I think it's worth trying.  Either it works or it doesn't.

I have posted a GF/CF/additive/refined sugar-free diet on my website, http://www.nutritionandmind.com.  It's free and downloadable.  There are other resources and free samples on the site.  

best,

Liz Lipski author of "Digestive Wellness" & "Digestive Wellness for Children"


RE: GF/CF diet:  good or bad - zoey - 07-02-2008 01:36 AM

There are a lot of ethical issues involved with autism cures.  You start with a genetic predisposition for enzyme suppression.  This leads to many problems, including difficulty digesting cas. and glut. which are hard to digest for anyone let alone enzymically challenged people.  When foods are not broken down they cause irritation in the digestive system and further lack of enzymes, also imbalance of probiotics which keep candida away.  The effect of candida when it evolves into its toxic state causes many other health problems.  Chemicals end up in the blood which shouldn't which cause immune problems.  

     So where are the ethics?  Shouldn't we just give these people enzymes?  Problem solved.  The problem begins with the fact that the same enzymes that break down food into body nutrition also start the process of breaking down food into neurotransmitters.  So no surprise that people who are genetically enzyme suppressed have neurotransmitter issues.  Another chemical process that starts in the digestive tract is the production of oxytocin, the brain chemical that makes people want to socialize and bond which cannot occur if there isn't enough enzyme activity.  

Then there are chemicals in our food that have to be dismantled or else too much chemical gets past the blood/brain barrier.  People who don't have enough enzymes to break the chemical down in the digestive process end up with toxicity in the brain which causes hallucinations.  Obvious answer to physical autistic problems, supplement the enzymes, make the supplement enzyme specific.  That's been done.  The pills have been made.  There are Cas/Glut enzyme pills, oxytocin pills, and plain old pancreatic enzymes or large amounts of epsom salts both of which break down the amines that cause hallucinations.

    So why don't we all take them?  Because for those of us who don't make oxytocin, we are spared the biological urge to want to connect with everyone we see.  We can make clear choices of who we want to be with and don't need to enter into unethical social behavior that is evident even in Aspies on this forum, those who have enough oxytocin to be able to engage in social behavior on the forum.  Those same chemicals that bond people together socially are those that cause them to lie to themselves to excuse socially unacceptible behavior in others and many of the other societal problems that we as autistics have been subjected to in the past.  

    For some of us, being on oxytocin is like being on a euphoric drug which makes you want to connect with everyone you see.  It fogs up our heads in the same way that being in love does, or the way sex can affect the mental state in men or hormones in women.  Plus, as you may have read here, most women feel gender neutral, if not male in their social orientation.  For us, to start to experience life on these chemicals would call for a  similar decision that someone undertaking a gender change would have to make.  This is a huge decision, one which many of us would not want to do, and an unethical one to place on a child who cannot say no to the pills if we do not like the effect.

     These enzymes are also very experimental in nature.  Those who have made them do not know why they work.  In my case the phenol enzyme creates further imbalance that turns into bipolarism.  The makers of the enzyme refuse to take responsibility for the adverse effects of the pills and  will reply to serious questions with answers like "We don't know what it does, but it seems to help with beer and wine intolerances."   So the cure is already here.  I guess we have to deal with it.


RE: GF/CF diet:  good or bad - zoey - 07-04-2008 12:32 AM

Sorry, all.  I did some more reading on the forum and realize that although this forum is against cure, they don't believe that the any of the curebie methods are real, or at most they thing the parents may be making it up or exagerating.  I don't have intention to rock that boat and respect the beliefs of this forum, so please ignore my post before this one.


RE: GF/CF diet:  good or bad - EvilZakkie - 07-04-2008 01:26 AM

zoey Wrote:
Sorry, all.  I did some more reading on the forum and realize that although this forum is against cure, they don't believe that the any of the curebie methods are real, or at most they thing the parents may be making it up or exagerating.  I don't have intention to rock that boat and respect the beliefs of this forum, so please ignore my post before this one.


Hi Zoey,

I just wanted to say please feel free to rock the boat - different beliefs are welcome.

Regarding oxytocin, it does appear to modify some elements of behavior - Whether or not it's an actual "cure", it's good to discuss the ramifications of whether or not it should be made available, or discouraged. There's a lot of complex issues around these different types of medical supplements, and I want to make sure debate is encouraged and supported here.


RE: GF/CF diet:  good or bad - Silver - 07-04-2008 01:28 AM

EvilZakkie Wrote:
Regarding oxytocin, it does appear to modify some elements of behavior - Whether or not it's an actual "cure", it's good to discuss the ramifications of whether or not it should be made available, or discouraged. There's a lot of complex issues around these different types of medical supplements, and I want to make sure debate is encouraged and supported here.


I think there was at least one recent thread on this that I saw, wasn't there?


RE: GF/CF diet:  good or bad - Ethel - 07-04-2008 10:57 AM

I'm sorry, thread hijack immanent, but if I don't ask this I'm going to pop...

Quote:
So why don't we all take them?  Because for those of us who don't make oxytocin, we are spared the biological urge to want to connect with everyone we see.


I am desperately lonely, and REALLY want to "connect with" someone, anyone!  I've got some friends online (you know who you are, and I love you) but I don't have any in the real world.  I want to, I just don't have the social skills to even begin to know how make it happen.

So... does this mean that my kind of autism is different from the kind of autism that involves oxytocin problems?  Does it mean I'm a defective autistic because I've failed in the Spock-like logic stakes?  Or does it mean - GASP! - that maybe the hoary old chestnut about autistic people being aloof, emotionless logical creatures is not 100% founded in fact?


RE: GF/CF diet:  good or bad - zoey - 07-04-2008 11:38 PM

Ethel Wrote:
I'm sorry, thread hijack immanent, but if I don't ask this I'm going to pop...

Quote:
So why don't we all take them?  Because for those of us who don't make oxytocin, we are spared the biological urge to want to connect with everyone we see.


I am desperately lonely, and REALLY want to "connect with" someone, anyone!  I've got some friends online (you know who you are, and I love you) but I don't have any in the real world.  I want to, I just don't have the social skills to even begin to know how make it happen.

So... does this mean that my kind of autism is different from the kind of autism that involves oxytocin problems?  Does it mean I'm a defective autistic because I've failed in the Spock-like logic stakes?  Or does it mean - GASP! - that maybe the hoary old chestnut about autistic people being aloof, emotionless logical creatures is not 100% founded in fact?


------------------------------------------------------------------
  Please forgive me for knowing nothing about the hoary chestnuts yet.  I was probably just being closedminded thinking that everyone is like me, or wishful thinking that there would be other emotion-blind people here (can't read/understand emotions unless it's third-person, book, movie).  I'll also confess that I was amazed to find out that the people here with AS could socialize just as well as any NT,  recognize all the levels, read all of the emotional cues, talk about "nothing", form subgroups, squabble, everything that NTs do.  And I just thought everyone must be making up the "I have trouble socializing" comments to make those of us with lower functioning social skills feel better.  

   Sorry to be sounding naive, but how could someone have trouble socializing face to face when their social skills on the forum are so good?  It's very depressing knowing that I'll never be able to join the social part of this forum.  Connection to other humans is the only thing that matters to me as well, and the only friends I can have are the few Spocks, NT or AS, who won't use emotion in their interractions because ethical/political/philisophical reasons.

     But to me you seem so lucky to be able to fit in, at least in a non face-to-face environment.  I would give anything to be able to find a group where people were like me, even a virtual one.


RE: GF/CF diet:  good or bad - Ethel - 07-05-2008 04:14 AM

I'm sorry, Zoey.  I'm oversensitive at the moment (because I'm having issues in real life and I'm *really lonely*) but that was no excuse to have a go at you.  I'm sorry.

My social skills are shite, trust me.  Smile  The beauty of the forum is it's 1.  not in real time and 2. not one-on-one.  I can blow in, post a heap of crap, come back 12 hours later and read the replies, then come back later again and reply myself.  Way more processing time than if you're actually talking to someone.  

I don't do one on one stuff well at all.  It's not even just a real-life problem, it happens with PMs and emails, too.  I don't tend to use private messaging unless someone else sends me a message first.  And then I freak out and stumble over a reply, and I'm never quite sure at what point the conversation's over and not to reply again... and if the other person doesn't reply, I don't know if it's because the conversation reached it's natural end, of I've pissed them off.   My social skills are deeply ordinary, I just happen to have pretty good linguistic skills which covers it a bit.

Anyway, getting this back somewhere resembling the topic... I haven't read a lot about oxytocin but what I HAVE read, doesn't sound helpful.  I can think of at least three ways suddenly feeling like you're in love with everyone you meet could be very dangerous.  And, the desire is all well and good but does it do anything at all to mysteriously impart the skills to do anything about the desire?  I'm deeply cynical that an enzyme can improve my conversation skills.

(It if could, someone would have already bottled it and be selling it.  It'd be a goldmine.)


RE: GF/CF diet:  good or bad - zoey - 07-05-2008 09:33 PM

[quote=Ethel
Ethel:

I don't do one on one stuff well at all.  It's not even just a real-life problem, it happens with PMs and emails, too.  I don't tend to use private messaging unless someone else sends me a message first.  And then I freak out and stumble over a reply, and I'm never quite sure at what point the conversation's over and not to reply again... and if the other person doesn't reply, I don't know if it's because the conversation reached it's natural end, of I've pissed them off.   My social skills are deeply ordinary, I just happen to have pretty good linguistic skills which covers it a bit.
-----------------------------------------------------------------
This sounds exactly like me.  I die a million deaths over the smallest social encounters, and I hate not knowing what I'm doing.  It's miserable.  

----------------------------------------------------------------
Ethel:
Anyway, getting this back somewhere resembling the topic... I haven't read a lot about oxytocin but what I HAVE read, doesn't sound helpful.  I can think of at least three ways suddenly feeling like you're in love with everyone you meet could be very dangerous.  And, the desire is all well and good but does it do anything at all to mysteriously impart the skills to do anything about the desire?  I'm deeply cynical that an enzyme can improve my conversation skills.

(It if could, someone would have already bottled it and be selling it.  It'd be a goldmine.)
[/quote]-----------------------------------------------------------

  Just so you know, yes, it does miraculously impart the skills, and if you don't have the desire, like me, it will give you the desire.  It's no mystery, no miracle, just biological chemistry.  It's the instinctive part, it's hormones, chemicals, just like you see in animals.  And people accept this in animals.  But we don't want to see it in ourselves.  So much of our social programming is genetic, instinctual, through chemicals, hormones.  Oxytocin starts with food, ends with hormone.  No enzymes, no hormone.  So if genetically low-enzyme people report that certain enzymes fix their brain chemicals, why is this so crazy?  

    If you are suffering from the symptoms, why wouldn't you try the phenol enzyme.  Google it, get a sample, try it.  Maybe it won't work for you, but what's the harm?  Also, I can tell you that people recognize me socially when I am on the enzyme.  They include me, talk to me, approach me, even if I haven't said anything to them, even people who have known but ignored me for years.  And a few days after I stopped, I was socially ignored again.  You cannot tell me this is "not knowing the proper cues."  I went off and on it twice, same response.  

     For some reason it seems that people on AFF have dismissed the stories.  So if people who are suffering horribly from the symptoms dismiss the claim of a goldmine even though it's harmless to try it, then I guess that' explains why it hasn't been discovered.  It's the same with stimming.  Why do people act like it's this thing they have to live with?  I stimmed privately my whole life.  I tried high dose vit. C for something else once, and it happened to stop my stimming, yes, instantaneously, miraculously.  I couldn't tolerate the high dose, stopped it, and the stimming came back.  

   I have personal reasons why I don't want the chemicals that make people bond.  I would rather stay free of the instinct and make choices on my free will.  The compulsion to socialize is uncomfortable to me.  It felt like I was on drugs, like my choices weren't "sober."  Plus I feel that shunning people because of unimportant or imperceptible differences is a form of bigotry, and I like that my AS screens those people out of my life.  Obviously the only problem with that is it's most of the people on the planet and that can get a LITTLE LONELY.  But it's my cause, so I'm okay with it.
But there is no reason you should suffer.


RE: GF/CF diet:  good or bad - earthmonkey - 07-05-2008 11:01 PM

Why would someone want to stop stimming?

For me, when I found people who are my friends in high school, I don't give the typical sorts of signals, but I can usually read theirs, which I've read is unusual for autistics (however, I have trouble with naming the words out of the blue for the emotions I pick up, and the only time I test accurately for this is when I get to point to a word that's written down).

I do, however, have difficulty initiating speech and getting the timing right, mainly because there's a delay between when I decide to interject and when I actually can, and by then the topic's moved on, etc. That's why I don't usually speak much, and the timing is off, and it's the sort of thing that people who don't know me often get an awkward expression on their face.

I too have noticed that a lot of NTs don't seem to notice me, whether it's me with an index finger raised, my mouth open about to ask a question and leaning forward into the group, and also a lot of times when I would be expressing pain or sickness I have got not noticed, and so I had to over-exaggerate my body language so they could see it (apparently my natural body language is far too subtle for most NTs to pick up on).

Unfortunately, since I have difficulty reaching an intermediary stage of expression, it's considered so over-exaggerated that I've been assumed to be lying, faking, and still ignored, except this time with scorn.

I believe that it's plausible for such a diet to help some people, those who are food-sensitive in addition to autistic - like another has noted, I feel better when I'm having a diet that's high in fiber, low in saturated fats and simple carbohydrates, and with protein and good amounts of vitamins, and when I have more energy I can tolerate more in the way of sensory disruptions.

Most of the opposition from people on this forum is to the idea that this is a cure, or that it helps all autistics, or that it's this food sensitivity that causes autism, and also a lot of the criticism is directed toward some of the louder proponents of it (such as Jenny McCarthy) who mostly don't know what they're talking about, and think their kid is "recovered" because they've developed some skills.

Add this to the fact that autistics gain skills and develop anyway, and parental reports are affected by bias and memory, especially these things have impact when it's a long-term period of time over which the changes are said to occur.

Add placebo effect (I recently experienced placebo effect in the way of shampoo trials - looking for one that doesn't irritate the heck out of my skin, about to try a no fragrance shampoo), and there's good reasons to be skeptical.
Also, when a diet like this is attempted, it's very important to be in the guidance of a good doctor or nutritionist.

It's kind of like a vegetarian diet - you can do it and still be healthy, getting what you need from different sources, but it can easily be done wrong and get you nutritionally deficient (one early symptom of which is a high energy good feeling, so it's important to be consulting a nutrition expert so that you know the high energy good feeling is from having a better diet rather than from having a deficient diet).

I mention this because it's been said "what's the harm if it doesn't work", and that is true as long as it's being done in a nutritionally sound way.


RE: GF/CF diet:  good or bad - Ethel - 07-06-2008 12:04 AM

Just been back from a stint of googling, in case anyone's interested...

Oxytocin's destroyed by the gut, which means it has to be taken intravenously or by nasal spray.  There's no evidence the nasal spray actually makes it through the blood-brain barrier.  The side effects can include seizures, heart irregularity, impaired ability to urinate and uterine rupture.

I think I'll pass on that one.


RE: GF/CF diet:  good or bad - micgrace - 07-06-2008 01:25 AM

Ethel Wrote:
Just been back from a stint of googling, in case anyone's interested...

Oxytocin's destroyed by the gut, which means it has to be taken intravenously or by nasal spray.  There's no evidence the nasal spray actually makes it through the blood-brain barrier.  The side effects can include seizures, heart irregularity, impaired ability to urinate and uterine rupture.

I think I'll pass on that one.

The last point uterine rupture. It is used to induce a babies birth. I know my wife was induced three times using oxytocin. Once for a full term stillbirth. Then didn't want to take any chances so next two children were induced early.


RE: GF/CF diet:  good or bad - Ivar T - 07-08-2008 05:27 PM

lizlipskiphdccn Wrote:

voiceoffreedom Wrote:
I want to know people's opinions on the GFCF diet.  Is it a legit medical thing?  Is it a "cure."?


I'm a clinical nutritionist. I've been using gluten-free/casein free/additive free/processed sugar free diets for over 20 years with children and adults with all types of medical and health issues, including autism.  I don't think that they are a cure.  But here is what I have seen:  Digestive issues often clear up completely, people's minds seem clearer, people have more energy, joint issues resolve, skin improves, people can concentrate better. This is an inexpensive and simple thing to try.  Recently I was working with a 7 year old girl on the spectrum.  Within two weeks her behavior had remarkably improved.  Her parents and teacher were thrilled and she continues with the diet.  The Autism Research Institute provides a place for people to post results for virtually every intervention they try (drugs, acupuncture, diet, behavioral therapies, sensory therapy, etc.)  65% of 2000 people report that GF/CF diet is useful.  I think it's worth trying.  Either it works or it doesn't.

I have posted a GF/CF/additive/refined sugar-free diet on my website, http://www.nutritionandmind.com.  It's free and downloadable.  There are other resources and free samples on the site.  

best,

Liz Lipski author of "Digestive Wellness" & "Digestive Wellness for Children"

If there something you should avoid if you want me to take you seriously, it would be Autism Research Institute - another face of DAN!

grr...


RE: GF/CF diet:  good or bad - Batman55 - 07-25-2008 07:05 AM

zoey Wrote:
     But to me you seem so lucky to be able to fit in, at least in a non face-to-face environment.  I would give anything to be able to find a group where people were like me, even a virtual one.


There's always the phenol enzymes for that, and the magnesium supplements...


RE: GF/CF diet:  good or bad - Batman55 - 07-25-2008 07:11 AM

Curious, but if these miracle cures have been around for a while, why isn't there any mention of it on AFF?  Why aren't there members trying these things and reporting that the differences are dramatic?  Why haven't we heard of young autistic children being cured by these "enzyme remedies"?


RE: GF/CF diet:  good or bad - Jodes - 07-25-2008 09:03 AM

I'm wondering the same thing...

Because I don't have the science-mind to even begin to understand the technicalities of how enzymes work (my brains, such as they are, are all in the arts) I'd never be able to research and *understand* for myself the way Zoey has been able to.  (Round of applause, please? Z deserves it.)

So... I rely on someone else researching it, developing it into a format suitable for idiot-proof self-administration, and selling it to me.  Smile


RE: GF/CF diet:  good or bad - Tigger_the_Wing - 07-25-2008 01:27 PM

Applause for zoey and Jodes!



I think now might be a good time to summarise what I've written (at length) about before.

As being autistic in a world largely organised for NTs is very, very stressful, anything that boosts the base stress levels of the autistic person is likely to result in major problems; it follows that anything that reduces base stress levels will make coping with external stresses easier.
_________________________________________________________________
Now, whether the base stress is raised by underlying gastro-intestinal, cardiovascular, muscular-skeletal, hormonal, neuronal or immune problems; or great-aunt Fanny's continual verbal abuse; the important thing is to find out what, if anything, is the underlying problem.

Oxytocin; I produced plenty of that, lactating over 28 years, bonding really closely with my children. Other than that, pregnancy and breastfeeding made me more 'closed in' on myself and my baby/ies rather than more social.

GF/CF; I'm on a GF diet for other reasons than autism. On the diet, my guts aren't painfully distended and I have a reasonable level of energy.

When I'm well I can go out and meet people in public. I can join a choir or an evening class, even go to work and hold down a job for months at a time.

When I'm sick is when I stop pretending. I can't 'act normal' when I'm sick, because I've used up all my energy in order to function at all.

Make me well and I can pretend all you want. I'll get it wrong, of course; I still won't be able to make 'normal' eye-contact as I still have no idea what is considered 'normal'. It seems to vary according to rules of social dominance that I've never worked out! Rolleyes

That is why it was a relief to find out about Asperger's; it made sense of my life in a way that nothing else did. I tried all sorts of diets and supplements over the years; the only ones I stuck with, because they worked for me, were the GF diet and Evening Primrose Oil capsules. Although my heart meds have meant that I've had to give up the EPO along with the arthritis meds.

With a viral infection that I've been fighting off for four weeks now, you'd be hard put to judge my current functioning level as very high at all. Tongue Remove the infection, and I'll be up and about again.


RE: GF/CF diet:  good or bad - michele522 - 07-25-2008 06:53 PM

Going back to the original question, I'll give you one of the most intelligent responses I've ever gotten to the same question:

If a person has food allergies/intolerances to gluten or casein, removing it is going to help them, because you've removed an irritant to their system.  If anyone has an allergy, and keeps unwittingly ingesting/exposing themselves to that substances, they're going to be pretty unhappy, and it's going to come out in their behavior.  Remove the substance, and behavior is going to improve - autistic and NT alike.  What you've "cured" though, is the allergy - not autism.  

My personal opinion - it's one of those things that falls under the heading of "might help, doesn't hurt."  If it doesn't work, or you don't desire it's effects, don't do it.  My son is casein free, and it's helped free up more of his energy to be able to attend, in general.  Does he feel better than he did before?  Yes.  Is he still autistic?  Also yes.  


RE: GF/CF diet:  good or bad - Johanna - 08-26-2008 03:48 AM

I think they're OK if it is proven that the person's body doesn't function well with gluten and casein, but I think it is ridiculous to think of it as a cure for autism, as many doctors erroneously think.
A tip of the hat to Ethel for showing me that GF/CF diets aren't that bad after all.


RE: GF/CF diet:  good or bad - Tigger_the_Wing - 08-26-2008 04:25 AM

An update to what I wrote; the 'viral infection' that I thought I'd been suffering turned out to be side-effects to Endep (the side-effects accumulated until I was suffering things that were in no way attributable to a viral infection).

Cessation of the Endep has led to a dramatic improvement in functioning. Guess what? I'm just as autistic as ever! Tongue

Oh, and my arthritis got worse in the interim... Sad


RE: GF/CF diet:  good or bad - earthmonkey - 08-26-2008 05:09 AM

Ethel Wrote:
Just been back from a stint of googling, in case anyone's interested...

Oxytocin's destroyed by the gut, which means it has to be taken intravenously or by nasal spray.  There's no evidence the nasal spray actually makes it through the blood-brain barrier.  The side effects can include seizures, heart irregularity, impaired ability to urinate and uterine rupture.

I think I'll pass on that one.


Ooh, yuk...pass.


RE: GF/CF diet:  good or bad - Ivar T - 08-26-2008 07:34 AM

There's a test for "milk protein intolerance" that was discredited in the study I posted first in this thread.


RE: GF/CF diet:  good or bad - live_with_it - 02-05-2009 05:22 PM

[quote=Ivar T]
http://03530.com/2008/03/25/special-diets-and-autism.html

In this high quality study from March they found that the usual testing for urine morphine-peptides (which should indicate food intolerance according to the opioid excess theory behind GF/CF) with HPLC equipment indicated peaks, which could be morphine peptides, but that with further testing with MALDI-TOF MS they found that the peaks did not represent morphine peptides.

---
I'm sorry I think you're on wrong track here. All the science behind the GFCF diet is very difficult for ordinary mortals to understand. The best source for information on this issue is the Autism Research Unit at Sunderland University.
They use HPLC to test urine but they aren't testing for "morphine peptides", they're testing for "trans Indoloyl-Acryloyl Glycine (tIAG)" - (see http://centres.sunderland.ac.uk/images/evaluation%20of%20urinary%20profiles%201997.pdf)
Now this IAG is definitnely connected to Autism and gut permeabilty. For me to explain the further connections to peptides would take me several hours of rereading all this stuff.

In general the theory behind the GFCF diet is very hard to grasp. It is rather simplistic when some people talk about "food intolerances" and "I tried it for a week and it didn't work". It's much more complicated.

I've understood it enough to motivate myself to stick on a GFCF diet and it does reduce some symptoms without I feel taking away my essential Aspieness.


RE: GF/CF diet:  good or bad - Ivar T - 02-06-2009 12:15 AM

I've learnt more about this theory since, and am aware that Paul Shattock - a gibbering DAN!-doc, is strongly associated with the Autism Research Unit, and I have a really hard time trusting anything associated with DAN! for matters you should be well aware of if you are to understand the politics of autism.


RE: GF/CF diet:  good or bad - skyblue1 - 02-06-2009 01:58 AM

I dropped gluten from my diet a month ago. My stomach problems have cleared up and I feel much better. Have also lost over 15 lbs. I dont think GF has anything to do with Autism,but my stomach feels much better.


RE: GF/CF diet:  good or bad - madmick - 02-06-2009 01:31 PM

I have Gluten intolerance and I now know what my intestines look like and I also had the stomach biopsy. I have tried taking things like MSM which helped a bit.
My wife cooks curries occasionally and after each one I would feel better. Because she uses so many ingredients I tried to find out which one/s were helping - well I discovered cilantro had a major effect. I googled it and found some interesting things about it. I have been taking it daily for 2 weeks now and my chronic fatigue has reduced considerably. I can think clearer and my lips and gums are feeling healthier.
By the way if any of you have to have a barium enema, they empty your intestines totally. Fill them full of air so they can look around inside.
The air comes out about an hour after you leave the hospital and they must think it really funny because the doctor said I hope that your not going to do any public speaking today.
I found out what he meant because I was in a shop with quite a few people - can you imagine how much air you can put inside a human. It was one of the most embarrasing episodes of my life and made my eyes water as well.


RE: GF/CF diet:  good or bad - live_with_it - 02-08-2009 09:44 AM

You wrote :
“In this high quality study from March they found that the usual testing for urine morphine-peptides (which should indicate food intolerance according to the opioid excess theory behind GF/CF) with HPLC equipment indicated peaks, which could be morphine peptides, but that with further testing with MALDI-TOF MS they found that the peaks did not represent morphine peptides.”

I replied:
“………They use HPLC to test urine but they aren't testing for "morphine peptides", they're testing for "trans Indoloyl-Acryloyl Glycine (tIAG)"…”


You then replied:
“I've learnt more about this theory since, and am aware that Paul Shattock - a gibbering DAN!-doc, is strongly associated with the Autism Research Unit, and I have a really hard time trusting anything associated with DAN! for matters you should be well aware of if you are to understand the politics of autism.”

Well you haven’t answered my specific point about the relevance and validity of this study you quoted.

You seem to have set yourself up as an expert at debunking the GFCF diet and the method you seem to be using is to choose questionable studies wily-nilly which appear to back up your position. You really ought to read Ben Goldacre’s Bad Science in the Guardian where he explains how these supposedly scientific studies are often seriously flawed or their actual results have been distorted by newspapers like the Daily Mail to provide sensational dramatic headlines.

This time can you provide a reasoned, logical, scientific response  rather than an emotional rant.


RE: GF/CF diet:  good or bad - micgrace - 02-08-2009 11:53 AM

HPLC is far from infallible. A peak can be from any number of compounds as one has to run blanks of the suspect compounds to compare with reasonable certainty. Molecules with similar H bond properties and similar molecular weight will give similar peaks. I won't go into the theory of HPLC, that gets difficult to understand.

Suffice to say errors in applications have resulted in all sorts of weird outcomes. People jailed, incorrect conclusions etc. The "information" from HPLC needs to be confirmed by unrelated methods. One method by itself is insufficent evidence.

Take for example my own molecule. It has been through most types of NMR, mass spectroscopy, IR, UV, crystallography, potentiomentry etc to confirm existence and identify properties. They didn't.


RE: GF/CF diet:  good or bad - micgrace - 02-08-2009 01:53 PM

I might add the GC diet does seem to have beneficial effects for quite a few aspies. So possibly something else is going on here. Since I do know a few who follow this diet it does appear to enhance their functioning. We do appear to have different brain chemistry which would explain the neurological differences, which is based on genetic differences so we could possibly react to certain chemicals in food in unusual ways that an NT may not.

But yet again, the science gets twisted to "it causes autism" which is rubbish science. The fact remains certain people have certain effects from certain foods. An allergy to something. Gluten intolerance isn't exclusive to autistics, but to many others as well. Lactose is another and so on.


RE: GF/CF diet:  good or bad - live_with_it - 02-08-2009 09:40 PM

Thanks for a fair and level- headed response to my last post!

I'm not totally convinced and certain about the GFCF diet. In my own experience it has reduced some undesirable symptoms of Aspergers but it's far from a "cure" and that's not what I wanted anyway.

The question of whether Gluten and Casein causes Autism is also debatable. And there are all sorts of problems with the urine tests.

What I objected to originally was people trying to rubbish the GFCF by using a questionable study, and also when thousands of people have benefiited from this diet.

I wonder if you could explain to me why certain people get so annoyed by the this issue. I mean if they don't agree with trying to "cure" or ameliorate symptoms of Aspergers it's their right to not have anything to do with such "treatments" but why do they feel the need to try and dispute the science behind it?

Thanks


RE: GF/CF diet:  good or bad - tinkadill - 02-08-2009 09:55 PM

I'm not making a judgment either way! but could you tell me what 'sympoms' of Aspergers you would like to cure?

I have a few OCD issues that i suppose are made worse by AS but as for AS itself I am fairly content as i am.

Are there particular things you would like to cure or ameliorate?


RE: GF/CF diet:  good or bad - live_with_it - 02-08-2009 10:29 PM

Well first let me say it's everyone's personal choice whether or not to go down the GFCF diet route, if you'd prefer to hang on to all of your Apergers symptoms that's fine by me. Part of the  reason why I tried it is to with the fact that I'm probably a lot older than most of the people on this forum and I felt my life hasn't been too great so far and if I could reduce some of my symptoms it would improve my quality of life and I could achieve more.

Some of the main symtoms I wanted to ameliorate are (not necessarily in any order of importance):

1. Poor quality of sleep. My sleeping has improved on the diet and I have more energy during the day, don't fall asleep after meals so much and I don't go into stupors and get a fogged up brain so much.
2. Depression.
3. Anxiety. This wasn't one of my original aims but discovered when I went on the diet that I had been acutely anxious about everything and this was reduced.
4. Bloated bowels and intemittent constipation. The diet has cured this.I won't go into detials!
5.Social phobia.
6. Inabilty to filter out background noise, e.g. when trying to have a conversation with one person in a pub.

If you've got OCD I don't know if this diet could help. I've become less obsessional about my interests and hobbies, I'm not sure that's a good thing. If your OCD is interrelated with Aspergers then I suppose it could have an effect.


RE: GF/CF diet:  good or bad - micgrace - 02-08-2009 11:35 PM

Symtoms of aspergers is a misnomer. It is much more correct to use traits. It is not a disease, you can't "catch it". Brain activity is certainly controlled by chemicals/enzymes etc. Ours are no doubt a bit different than others, not better or worse, just different. Being different has always been a problem.

One does wonder if there is a bit of a placebo effect as well with some traits appearing to be alleviated by it if the person believes in it strongly enough. However, an intolerance to gluten / lactose is certainly real. Whether that is related to aspergers, I don't think so. The diet itself didn't do a thing for me except drive up costs.


RE: GF/CF diet:  good or bad - tinkadill - 02-09-2009 12:11 AM

live_with_it Wrote:
Well first let me say it's everyone's personal choice whether or not to go down the GFCF diet route, if you'd prefer to hang on to all of your Apergers symptoms that's fine by me. Part of the  reason why I tried it is to with the fact that I'm probably a lot older than most of the people on this forum and I felt my life hasn't been too great so far and if I could reduce some of my symptoms it would improve my quality of life and I could achieve more.

Some of the main symtoms I wanted to ameliorate are (not necessarily in any order of importance):

1. Poor quality of sleep. My sleeping has improved on the diet and I have more energy during the day, don't fall asleep after meals so much and I don't go into stupors and get a fogged up brain so much.
2. Depression.
3. Anxiety. This wasn't one of my original aims but discovered when I went on the diet that I had been acutely anxious about everything and this was reduced.
4. Bloated bowels and intemittent constipation. The diet has cured this.I won't go into detials!
5.Social phobia.
6. Inabilty to filter out background noise, e.g. when trying to have a conversation with one person in a pub.

If you've got OCD I don't know if this diet could help. I've become less obsessional about my interests and hobbies, I'm not sure that's a good thing. If your OCD is interrelated with Aspergers then I suppose it could have an effect.



if you dont mind me asking how old are you? I am 42, And i must admit that when you describe the 'symptoms' (as you phrase them) your point of view does seem clearer and more valid. I ws onnly thnking of the more 'thinking style' traits not the physical down sides, and i do have issues with a few of those. Oddly I beleive i inherited my AS fomr my father and Intolerances to gluten etc. are also common in his side of the family so maybe you have a point. A better sleep pattern and more energy would certainly be ggod for me. Can you send me more info and I may gove it a try!


RE: GF/CF diet:  good or bad - Aeolienne - 02-09-2009 01:51 AM

live_with_it Wrote:
Some of the main symptoms I wanted to ameliorate are (not necessarily in any order of importance):

1. Poor quality of sleep. My sleeping has improved on the diet and I have more energy during the day, don't fall asleep after meals so much and I don't go into stupors and get a fogged up brain so much.
2. Depression.
3. Anxiety. This wasn't one of my original aims but discovered when I went on the diet that I had been acutely anxious about everything and this was reduced.
4. Bloated bowels and intemittent constipation. The diet has cured this.I won't go into detials!
5.Social phobia.
6. Inabilty to filter out background noise, e.g. when trying to have a conversation with one person in a pub.

Has the diet done anything for symptom no.6?


RE: GF/CF diet:  good or bad - live_with_it - 02-09-2009 09:27 AM

Aeolienne Wrote:
[Has the diet done anything for symptom no.6?


I'm not absolutely sure but it may have improved slightly. The big test would be to go out for a meal with a whole group of people in a noisy restaurant and try to carry on a conversation with one person. I'm not in the habit of going into such situations due to the intense soicial anxiety they give me.

Filtering is an interesting issue. If you want more info I'll sen d you a link.


RE: GF/CF diet:  good or bad - micgrace - 02-09-2009 12:02 PM

NOTE: Aspergers does NOT have symptoms. Diagnosis of aspergers is accomplished by reference to traits. Traits are something capable of being modified if so desired, if not easily accomplished. Symptoms is something one must "cure" and are basically fixed.

Be very clear about this: aspergers does not have symptoms, only traits. It is NOT a disease.


RE: GF/CF diet:  good or bad - live_with_it - 02-09-2009 10:48 PM

I thought this is meant to be a discussion forum. If you can't carry out a discussion without starting to order people about then you shouldn't be on it.

Adios amigo.


RE: GF/CF diet:  good or bad - Chamuel - 02-09-2009 10:58 PM

live_with_it Wrote:
I thought this is meant to be a discussion forum. If you can't carry out a discussion without starting to order people about then you shouldn't be on it.

Adios amigo.


sorry if you have been offended live_with_it, but you need to give us a chance.
People with a diagnosis of aspergers are not diseased (in my point of view). I don't even tend to think as people with a bipolar diagnosis as being diseased. It's a complex topic... ..


RE: GF/CF diet:  good or bad - Chamuel - 02-09-2009 11:02 PM

Also the written word makes our ideas and thoughts seem more cold and clinical - and sometimes by using caps. this can come across as being yelled, but .... I think micgrace probably wanted to stress something he feels strongly about - rather than intending to yell at you.
Miscommunication is to easy when we rely only on the written word.

FWIW I try to avoid gluten and lactose in my diet due to the awful "symptoms" that result.

The side effects of these foods do cause symptoms ...not traits, perhaps this is where some of the misunderstanding ^ have come in.


RE: GF/CF diet:  good or bad - live_with_it - 02-09-2009 11:04 PM

Chamuel Wrote:

live_with_it Wrote:
I thought this is meant to be a discussion forum. If you can't carry out a discussion without starting to order people about then you shouldn't be on it.

Adios amigo.


sorry if you have been offended live_with_it, but you need to give us a chance.
People with a diagnosis of aspergers are not diseased (in my point of view). I don't even tend to think as people with a bipolar diagnosis as being diseased. It's a complex topic... ..

I've never ever actually said people with Aspergers are diseased, it's an inference other people have chosen to make.


RE: GF/CF diet:  good or bad - live_with_it - 02-09-2009 11:05 PM

Quote:
if you dont mind me asking how old are you? I am 42, And i must admit that when you describe the 'symptoms' (as you phrase them) your point of view does seem clearer and more valid. I ws onnly thnking of the more 'thinking style' traits not the physical down sides, and i do have issues with a few of those. Oddly I beleive i inherited my AS fomr my father and Intolerances to gluten etc. are also common in his side of the family so maybe you have a point. A better sleep pattern and more energy would certainly be ggod for me. Can you send me more info and I may gove it a try!


It's interesting that you say there are Gluten intolerances on your father's side of your family. However, it's not realy a Gluten Intolerance we're discussing here.

(Other people may have mentioned intolerances but that's not the process going on here).

Most Aspies love eating gluten, they can't get enoguh of the stuff, they have no idea what it's doing to them, except they may notice their craving for it. Casein on the other hand which is in milk is a bit different in that a lot of Aspies have a natural aversion to milk because it tastes, feels too creamy and they are aware thier brains tend to get fogged up by it.

I'll send you some links and tips about the diet but I wouldn't advise you to go on it straight away and definitely don't go "cold turkey".


RE: GF/CF diet:  good or bad - tinkadill - 02-09-2009 11:09 PM

Well, I find that I do have a few symptoms of Gluten intolerance, maybe they are more prevalent in Aspies?

I am planning to make a few diet changes and see how things go, it can't hurt anyhting, and if nothing else i could do with looisng a few pounds.

It is good to discuss things and I htink it is possible to both over react, and be over sensitive to other peoples over reactions, I konw i do both, the best thing all round it is just to forge it and move on!


RE: GF/CF diet:  good or bad - Chamuel - 02-09-2009 11:12 PM

live_with_it Wrote:

I've never ever actually said people with Aspergers are diseased, it's an inference other people have chosen to make.


Oh, apologies.

If it is not gluten intolerance - what is it that causes the problems with gluten? and can you show links to research (not necessary) I am interested.

Also - I have had problems with overgrowth of candidia albicans - in my digestive tract.
I have read that people on the spectrum are more susceptible to this - any ideas on this?


RE: GF/CF diet:  good or bad - Chamuel - 02-09-2009 11:16 PM

tinkadill Wrote:

I am planning to make a few diet changes and see how things go, it can't hurt anyhting, and if nothing else i could do with looisng a few pounds.

It is good to discuss things and I htink it is possible to both over react, and be over sensitive to other peoples over reactions, I konw i do both, the best thing all round it is just to forge it and move on!


I avoid gluten ...  I'm still hungry and I haven't lost any pounds despite avoiding gluten for years.

As to your second point, and I find it really hard when to forget and move on when I feel hurt. The feeling I get tends to overwhelm me, and I tend to shoot back.Smile


RE: GF/CF diet:  good or bad - tinkadill - 02-09-2009 11:22 PM

Chamuel Wrote:
I avoid gluten ...  I'm still hungry and I haven't lost any pounds despite avoiding gluten for years.

As to your second point, and I find it really hard when to forget and move on when I feel hurt. The feeling I get tends to overwhelm me, and I tend to shoot back.Smile


Well i said i could do with loosing a few pounds, not that I had any serious plans to do it Wink As GArfield said 'I never met a calorie I didnt like'

I agree on your second point I do the same in real life and online, it is easy to spot others making mistakes but hard to stop doing it oyurself, don't worry about it, I am sure no one holds any real resentment against each other here, we are all on the same side!


RE: GF/CF diet:  good or bad - Chamuel - 02-09-2009 11:27 PM

tinkadill Wrote:
Well i said i could do with loosing a few pounds, not that I had any serious plans to do it Wink As GArfield said 'I never met a calorie I didnt like'

I agree on your second point I do the same in real life and online, it is easy to spot others making mistakes but hard to stop doing it oyurself, don't worry about it, I am sure no one holds any real resentment against each other here, we are all on the same side!


Ah fair point, on your first point.

As to your second point.... I am never wrong!! Tongue


RE: GF/CF diet:  good or bad - Gareth - 02-10-2009 12:36 AM

One point about diets:
Unless you know you have an intolerance (do a short-term test of the GF/CF diet or get a full blood panel etc) it is likely that you will end missing out on some nutrients. Exclusion diets have the issue in many cases that people take anecdotal evidence as fact and then proceed to eliminate whole food groups. This tends to be worse among parents fiddling with their kid's diets, but it's a risk in all age groups.

Long story short: there's no confirmed evidence that autistics have food intolerances in the majority of cases, if you find that you do have some food intolerances then talk to a dietician who is unbiased (not someone who pushes GF/CF as relating to autism - an unbiased diet specialist). The key is to only go this path if you need to, and if you must then try and make up for the nutrients you'll be missing out on.


RE: GF/CF diet:  good or bad - Aeolienne - 02-10-2009 01:28 AM

live_with_it Wrote:

Aeolienne Wrote:
[Has the diet done anything for symptom no.6?


I'm not absolutely sure but it may have improved slightly. The big test would be to go out for a meal with a whole group of people in a noisy restaurant and try to carry on a conversation with one person. I'm not in the habit of going into such situations due to the intense soicial anxiety they give me.

Filtering is an interesting issue. If you want more info I'll sen d you a link.

I don't see how it can work - what's the link between the bowels and the auditory nerves?


RE: GF/CF diet:  good or bad - tinkadill - 02-10-2009 02:52 PM

Aeolienne Wrote:
I don't see how it can work - what's the link between the bowels and the auditory nerves?


That seems a pretty direct conection to me, think of an animal that is fightened by a sudden loud noise and it involuntarily evacuates it bowlels. A fear response has actions on the bowels, and noises are often the things that cause fear responses, so their must be some conections.

This is of coures all just my opinion and i have no training in the field or proof so could easily be on the wrong track


RE: GF/CF diet:  good or bad - Chamuel - 02-11-2009 12:12 AM

I agree Tinkerdill, seems a logical connection. A difficulty digesting gluten throws the body out of synch. (badly in my experience). I would become extremely irritated and just want to sleep.
Throwing me in a crowded noisy wouldn't help anything.

Take away the stress associated with a reaction to gluten - social interaction will be much easier,  more focus would be able to be applied to auditory processing.

Most (if not all) actions set off a series of chain reactions. Not much happens in isolation.
The body as a system is holistic - there are many parts that link together to make up the whole.


RE: GF/CF diet:  good or bad - Aeolienne - 02-11-2009 12:55 AM

Chamuel Wrote:
A difficulty digesting gluten throws the body out of synch. (badly in my experience). I would become extremely irritated and just want to sleep.
Throwing me in a crowded noisy wouldn't help anything.

Take away the stress associated with a reaction to gluten - social interaction will be much easier,  more focus would be able to be applied to auditory processing.

But what if you don't have an intolerance to gluten? Or are you saying all Aspies do even if they don't realise it? FYI I've only taken laxatives twice in my whole life.


RE: GF/CF diet:  good or bad - Chamuel - 02-11-2009 01:53 AM

Aeolienne Wrote:
But what if you don't have an intolerance to gluten? Or are you saying all Aspies do even if they don't realise it? FYI I've only taken laxatives twice in my whole life.


Gluten intolerance is more likely to cause diarrhea than constipation.

No intolerance to gluten... no chain reaction.

If you have no symptoms related to gluten intolerance you are unlikely to have gluten intolerance.

I don't know if gluten intolerance is a trait typical to people on the spectrum.  I know research studies have been done - but (in my opinion) not nearly enough to provide conclusive evidence.

People on the spectrum have a variety of traits, we are all different.


RE: GF/CF diet:  good or bad - live_with_it - 02-11-2009 09:08 AM

I’m grateful to you guys Tinkadill, Aeollienne, Chamuel - for being open-minded and willing to consider the GFCF diet but I’m afraid to tell you this stuff can’t be figured out just by ordinary people chatting on a forum without reading the scientific material, understanding it and then maybe they can discuss it properly.

The science behind this is the product of the work of scientists from all over the world going back decades, you can't just figure it out off the top of your head. If you don’t try to read and understand the science your discussion is going to remain at a low level.

“Gluten intolerance” is not, in my opinion relevant. This is the process the GFCF diet theory is based on: peptides from gluten and casein are not properly digested, they pass through the very permeable leaky gut which people with Aspergers and Autism tend to have and then pass get into the blood and into the brain where they can cause changes to the way the brain functions.

Go to http://www.autism-help.org/intervention-casein-gluten-free.htm   to read a simplified introduction.

I would not advise people to go on this diet unless they already have the discipline to eat a conventional balanced healthy diet and have some understanding of nutrition. The diet will then not cause any danger of malnutrition, more likely it with improved bowel function it will lead to the better absorption of nutrients. Casein and milk are of debateable dietary value anyway (I’m going to open a debate about this – there’s plenty of material out there).

This diet does not work in all cases, and its results will vary from person to person. The science behind it is not completely worked out. That is the nature of science, it’s always in a process of development, discovery and investigation – in contrast to the dogmas held by usually reactionary people with fixed ideas.


RE: GF/CF diet:  good or bad - Ivar T - 02-11-2009 10:04 AM

Can you explain what is so questionable about the study I linked to?

While I certainly can't say that I've read through it all, it is hard to see how the opioid excess theory can have any bearing anymore after several studies have been unable to confirm that autistic children are more likely to excrete what was believed to be opioid peptides.

The study I directed to, aswell as this one, indicates that the substance detected by HPLC chromatography that people previously have believed to be opioid peptides, are infact not.

I'm not saying that the GF/CF can't help, I'm just saying that I find the opioid excess theory pretty damn dead, aswell as the most vulgar insult I've ever heard.

Here in Norway, where Kalle Reichelt is presented as some kind of smart-ass Galileo pioneer in the media, there's quite abit of dogma surrounding the GF/CF diet. Like this:

- If you haven't tried it, you have nothing you should have said.

- If it doesn't work... well, it doesn't work for everyone!

... leaving only those who believe to have seen improvement allowed to display any scepticism. I am one of those who it didn't work for, after I was claimed to be addicted to dairy products according to a HPLC test.


RE: GF/CF diet:  good or bad - micgrace - 02-11-2009 10:16 AM

Chamuel Wrote:

live_with_it Wrote:

I've never ever actually said people with Aspergers are diseased, it's an inference other people have chosen to make.


Oh, apologies.

If it is not gluten intolerance - what is it that causes the problems with gluten? and can you show links to research (not necessary) I am interested.

Also - I have had problems with overgrowth of candidia albicans - in my digestive tract.
I have read that people on the spectrum are more susceptible to this - any ideas on this?

That pest Candida albicans usually moves in after a bout of antibiotics. Take some live bacillus yogurt regularly to rid ones self of it by swamping it and changing the flora and fauna content. There are conventional treatments available which work for a while, then it returns after one stops. This worked well with my wife.


RE: GF/CF diet:  good or bad - live_with_it - 02-11-2009 05:49 PM

[quote=Ivar T]
Can you explain what is so questionable about the study I linked to?

Ivar I've already explained this once. In any case the urine tests do not provide definitive proof either way.

I'm thinking of drawing an end to my contribution here.

I'm shortly going to reply to a post from Gareth and concede to some points he made. I'll be using quotes from the Sunderland protocol which agree with his remarks. I'm afraid. They are the main source of my information on all this. I'm sorry they upset you so much.


RE: GF/CF diet:  good or bad - live_with_it - 02-11-2009 06:07 PM

Gareth Wrote:
One point about diets:
Unless you know you have an intolerance (do a short-term test of the GF/CF diet or get a full blood panel etc) it is likely that you will end missing out on some nutrients. Exclusion diets have the issue in many cases that people take anecdotal evidence as fact and then proceed to eliminate whole food groups. This tends to be worse among parents fiddling with their kid's diets, but it's a risk in all age groups.

Long story short: there's no confirmed evidence that autistics have food intolerances in the majority of cases, if you find that you do have some food intolerances then talk to a dietician who is unbiased (not someone who pushes GF/CF as relating to autism - an unbiased diet specialist). The key is to only go this path if you need to, and if you must then try and make up for the nutrients you'll be missing out on.


I’ve just been rereading the latest version of the Sunderland Protocol (http://centres.sunderland.ac.uk/autism/research-and-papers/durham2/ ) which his my source of information on the GFCF diet and I’d like to make some concessions to the points you raised.

The Sunderland people also advise caution on exclusionary diets:

“We would stress, yet again, that removal of staple elements of the diet are likely to result in reduced intake of vitamins and minerals and other essential nutrients. A good, balanced, supplement system should be instituted. This is best done with the active input of a knowledgeable professional who is sympathetic to and understanding of these approaches. Without appropriate levels of these essential nutrient elements the normal metabolic processes of digestion and absorption will be severely impaired in any case.”

I wouldn’t encourage anybody on this forum to go the GFCF diet without the advice of a professional dietician.

On the question of evidence that the diet works they say:
“There are no rigorous scientific studies that demonstrate effectiveness in ameliorating the symptoms of autism but there are numerous anecdotal reports that support its effectiveness.”
You’re still talking about “food intolerances” but I’m giving up the will to live on all this.


RE: GF/CF diet:  good or bad - tinkadill - 02-11-2009 07:02 PM

To be fair, I think online forums are the wrong place to discuss some conmplex issues and no matter what you say some one will miss interpret etc. It then becomes a pedantic battle of  picking on each individual word used etc. rather than an open minded debate.

And i am not reffering to this thread in particular (or for that matter this forum which is better than most)

But it is a general principal!


RE: GF/CF diet:  good or bad - Aeolienne - 02-11-2009 08:02 PM

live_with_it Wrote:
I’m grateful to you guys Tinkadill, Aeolienne, Chamuel - for being open-minded and willing to consider the GFCF diet

I've been called many things in my time, but never open-minded about the GF-CF diet! http://www.aspiesforfreedom.com/showthread.php?tid=5996


RE: GF/CF diet:  good or bad - tinkadill - 02-11-2009 09:07 PM

I try to be as open minded as possible, it is one of my little obsessions tyring to free your mind from the cultural paradigms we have all been set in.

but I am as capable, if not more so, as anyone at being wrong, jumping to coclusions and being pedantic though i do try to avoid it and will apoligise on request!


RE: GF/CF diet:  good or bad - Jacquip - 02-12-2009 09:47 AM

SmileHi There Everyone:

I have an autistic four year old called Jordan.  He is non verbal.  Please shed some light for me.  I am NT and I want to know why there is such hype about supplements and stuff for our kids?  Jordan is great and I wouldn't want to change him for the world. I don't view autism as a desease and I believe it is who he is.  I do however have him on the GFCF diet just to make life more comfortable for him. I believe that Gluten gives you guys a sore tummy and casien puts you on a high. This is the only reason I have him on this diet.  He is happy and he knows I love him and I can see he loves me. It has made the world of difference for Jordan because he has many food intolerances Why don't the doctors just try to understand that autism is just another way of being?  There is nothing wrong with it and why should we change it.

Oh Jordan also had liver issues - We have been giving him glutathione and Vitamin C via drip once every two weeks for a while now.

His liver has completely repaired and I can see my boy is happy. This doesn't mean he can have sugar now etc but it means his system is getting healthy.  His test results on other things look the best they every have. We don't give him anything but Nizerol for yeast, glutathione for his liver and NAC to boost his immune system and of course the diet.

My boy is doing great on the dietBig Grin

I am proud to say that Jordan started his first day of school today.
He is not in a typical NT school because that is not how he thinks and we respect that.  He has gone with his tutors who understand (or try too) how he thinks and he is there to teach others as well as how to be shown how we do things too.  His intelligence level is so much higher than ours and he is there to share with others and to be respected for who he is and not what we think he is.

I thank God everyday for Jordan he is a true blessing to us.

I joined this forum to be educated by you guys who live autism, you are the best teachers...please teach me.  NT MomSmile


RE: GF/CF diet:  good or bad - micgrace - 02-12-2009 10:14 AM

http://www.foodintol.com/celiac.asp This seems to have some scientifically based accurate information available on Gluten /Casein intolerance. It does have an extensive list of research articles listed. Autism is not mentioned.


RE: GF/CF diet:  good or bad - Jacquip - 02-12-2009 10:33 AM

Thanks for the information.  I will have a look at the link.