Do you eat gluten-free casein-free diet?

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Do you eat CF/GF Diet?
yes, i eat and it help me 27%  27%  [ 21 ]
no, i don`t 70%  70%  [ 54 ]
yes, i eat ; but it don`t help me 3%  3%  [ 2 ]
Total votes : 77

TheMachine1
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26 Jul 2007, 9:25 am

There is a study in Boston on:

"Intestinal Inflammation and Carbohydrate Digestion in Autistic Children"

Funded by CAN it looks like. :lol:

Quote:
Intestinal Inflammation and Carbohydrate Digestion in Autistic Children

This study is currently recruiting patients.
Verified by Massachusetts General Hospital March 2006Sponsors and Collaborators: Massachusetts General Hospital
Cure Autism Now Foundation
Information provided by: Massachusetts General Hospital
ClinicalTrials.gov Identifier: NCT00227487



Purpose
The purpose of the study was to find correlations between non-invasive fecal tests of intestinal inflammation and macro- and microscopic evaluation of duodenal and colonic histology, disaccharidase activity, and intestinal permeability in children with autism. Condition
Autism
Inflammation


MedlinePlus related topics: Autism

Study Type: Observational
Study Design: Natural History, Cross-Sectional, Case Control, Prospective Study
Further study details as provided by Massachusetts General Hospital:

Total Enrollment: 100

Study start: October 2005; Expected completion: May 2007
Gastrointestinal disorders in children with autism receive little attention. However, symptoms such as abdominal pain, diarrhea, constipation, and flatulence have been considered contributing to the behavioral problems. These symptoms are associated partially with the deficiency of enzymes digesting carbohydrates and inflammation of the gastrointestinal tract. The effect of intestinal inflammation on neurological disorders experienced by autistic children remains unclear. We will study this problem using recently developed non-invasive tests based on two proteins (calprotectin and lactoferrin) analysis in children’s stool Activity of enzymes needed for carbohydrate digestion will be tested in small samples of intestinal tissue. Intestinal permeability will be assessed by measuring urinary excretion of orally administered substances. This test will help to determine if intestinal inflammation contributes to a "leaky" gut syndrome. The study will provide valuable information for understanding the association between gastrointestinal disease and behavioral problems in autistic children.

Eligibility
Ages Eligible for Study: 18 Months - 17 Years, Genders Eligible for Study: Both
Criteria

Inclusion Criteria:
Age 18 months to 17 years inclusive.
Subjects referred to a Massachusetts General Hospital for Children (MGH Main Campus or satellite clinic) for pediatric gastroenterology care.
Subjects with documented gastrointestinal symptoms requiring endoscopy with biopsy for the standard medical treatment of their gastrointestinal symptoms (i.e. endoscopy with biopsy cannot be performed solely for research purposes).

Exclusion Criteria:
Use of digestive enzymes up to 7 days prior to endoscopy.

Location and Contact Information
Please refer to this study by ClinicalTrials.gov identifier NCT00227487

Rafail I. Kushak, PhD., Dr.Sc. 617-726-7451 [email protected]
Timothy M. Buie, MD 617-724-1748 [email protected]

United States, Massachusetts
Massachusetts General Hospital, Boston, Massachusetts, 02114, United States; Recruiting
Rafail I. Kushak, Ph.D, Dr.Sc. 617-726-7451 [email protected]
Timothy M. Buie, MD 617-724-1748 [email protected]
Rafail I. Kushak, Ph.D, Dr.Sc., Principal Investigator

Study chairs or principal investigators

Harland S. Winter, MD, Study Chair, Massachusets General Hospital

More Information
Study ID Numbers: KRPP1
Last Updated: March 6, 2006
Record first received: September 26, 2005
ClinicalTrials.gov Identifier: NCT00227487
Health Authority: United States: Institutional Review Board
ClinicalTrials.gov processed this record on July 25, 2007


This study in Israel looks like they are studying the opiate theory of autism.

Quote:
Trial of Low-Dose Naltrexone for Children With Pervasive Developmental Disorder (PDD)

This study is not yet open for patient recruitment.
Verified by Hadassah Medical Organization April 2006Sponsors and Collaborators: Hadassah Medical Organization
Jerusalem Institute for Child Development
Information provided by: Hadassah Medical Organization
ClinicalTrials.gov Identifier: NCT00318162



Purpose
This study will examine the effects of low-dose naltrexone (LDN) on children with autistic spectrum disorders. The investigators hope to show a positive effect on social functioning and language. Condition Intervention Phase
Pervasive Developmental Disorder Drug: low dose naltrexone Phase I
Phase II


MedlinePlus related topics: Mental Health

Study Type: Interventional
Study Design: Treatment, Randomized, Double-Blind, Placebo Control, Crossover Assignment, Safety/Efficacy Study

Official Title: Randomized Double-Blind Trial of Low-Dose Naltrexone for Children With PDD
Further study details as provided by Hadassah Medical Organization:
Primary Outcome Measures:
play observation
Autism Behavior Checklist (ABC) questionnaire

Total Enrollment: 50

Fifty children aged three to six years will be recruited for the study. They will be randomly assigned to receive either LDN or placebo for two months after which the treatment groups will be switched over. Assessments of functioning will be obtained from a video-taped play session, and by parent and teacher questionnaires at baseline, after two months and after four months.

Eligibility
Ages Eligible for Study: 3 Years - 6 Years, Genders Eligible for Study: Both
Criteria

Inclusion Criteria:
Diagnosis of PDD

Location and Contact Information
Please refer to this study by ClinicalTrials.gov identifier NCT00318162

David S Wilensky, MD 97227828142 [email protected]

Israel
Jerusalem Institute for Child Development, Jerusalem, Israel

Study chairs or principal investigators

David S Wilensky, MD, Principal Investigator, Jerusalem Institute for Child Development

More Information
Study ID Numbers: PDDLDN-HMO-CTIL
Last Updated: May 2, 2006
Record first received: April 25, 2006
ClinicalTrials.gov Identifier: NCT00318162
Health Authority: Israel: Israeli Health Ministry Pharmaceutical Administration
ClinicalTrials.gov processed this record on July 26, 2007



CRACK
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26 Aug 2007, 11:06 am

A gluten free diet sounds far too exclusionary to me. No thank you.



Ana54
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26 Aug 2007, 12:03 pm

I don't... maybe that's why I feel so miserable. Maybe I should. Or maybe it would make me worse. :)



Metal_Man
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26 Aug 2007, 6:42 pm

CRACK wrote:
A gluten free diet sounds far too exclusionary to me. No thank you.
It's a lot easier than you might think. I've been doing it for four years now and don't find it difficult at all. I was at death's door because of gluten so I have a lot of motivation to stay gluten free.


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Malachi_Rothschild
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27 Aug 2007, 11:35 am

I'm gluten free, soy free, avoid refined sugar and I'm vegan. I took food sensitivity testing that suggested I avoid casein, gluten and sugar. It's definitely helped me. I've noticed I'm thinking more clearly, less impulsive or irritable. The people around me seem to notice a difference too. I used to eat a lot of casein and gluten. That's what I craved. And I still crave it sometimes.



conduit
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11 Sep 2007, 9:46 pm

I guess I’m sneaking in through the back-door here a bit. I’m interested in this discussion because I was recently being tested for celiac disease and had a very positive experience on a gluten free diet. Problem is, most of the ways in which the diet worked for me were not consistent with celiac disease.

I noticed right away that I was feeling very different mentally. I felt much more confident, much less irritable, very energetic, outgoing and motivated, better able to concentrate. After a few weeks it was also clear there were a lot of physical changes too. I felt much less tension in by sinuses and upper back, my skin cleared up, my eyes whitened, even swelling around my sides and joints went away. Most of these were conditions which I considered “normal” for myself, and some which I wouldn’t have even noticed until they went away. All of them also return when I’m back on gluten.

When I was being tested for celiac I had a blood test which showed abnormal levels of gluten reactive antibodies, but a biopsy did not show the intestinal damage characteristic of the disease. Nevertheless, while my doctor was doing the biopsy she did find evidence of gastroparesis – that my stomach muscles weren’t contracting frequently enough, and that food wasn’t being digested very well or very quickly.

I’m now wondering if there’s a linkage between my gastroparesis and what seem to be AS symptoms – especially because I also felt good while being on a medication (Reglan) to force my stomach muscles to contract. Since being off the meds – and a miserable period back on gluten – I’ve voluntarily gone back to eating gluten-free and am considering cutting out the casein.

I wish I knew for sure what was going on with my body, but I suppose the “leaky gut” types of explanations given for the gfcf diet might make sense and are consistent with my gastroparesis. One question I have for those who are on the diet is how strict are you? I understand why celiacs need to be constantly paranoid about cross-contamination, but do you think it’s necessary for aspies to have to? I admit I’m a bit worried that by cutting something out of my diet completely that I’ll just be setting myself up for a worse reaction if I’m accidentally exposed.



siuan
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11 Sep 2007, 9:56 pm

I'm already so restricted in what my safe foods are (I have a lot of sensory problems with foods and I adamantly refuse to eat anything unhealthy except for my horrid sugar addiction) that I basically would be starving myself if I cut gluten and dairy from my diet. Having been lactose intolerant as a kid and into my teens, I go a little nuts with dairy now (yogurts, skim milk and fat free ice cream are always in my home).

I don't think I'm worse with them. I do think my daughter gets more difficult with both gluten and dairy though - but there again, cutting those out of a preschooler diet seems too restictive to be healthy. Perhaps I don't know enough about it.


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11 Sep 2007, 10:31 pm

I'm not eating a GFCF diet right now.

Before I knew about AS, my mom tried to eliminate dairy products, wheat and sugar from my diet (just for losing weight). I love cheese and milk with cookies, I used to drink 750 ml of milk everyday aprox., and my mom said "You can drink only a little glass of milk everyday or a slice of cheese with one fat free cookie". I was very angry, my mom noticed my bad temperament, and she allow me to eat everything again.

I think that diet sucks!



CentralFLM
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12 Sep 2007, 8:28 am

Without a doubt I have had positive effects of a gluten and casein free diet before I even knew I had Aspergers. I've now been back on it for a week, but it takes a while for the AS symptoms to start going away. Already I am sleeping better and not stemming as much. When I did go on a diet limiting these foods I had the same effect you did. My confidence went up 10 fold.
I know what you are saying about not being perfect on th diet. For example yesterday for lunch I had a bowl fo chilli from Wendys. I'm sure there are traces of gluten in it. The American diet is literally based on gluten. The main reason is because it is cheap, takes forever to spoil, and is used to extend the life of food........and it taste good. It is also a drug to make you want more. But I wouldn't beat yourself up if you think you may accidently have some in your diet, just don't be blatant about it.
As for wanting to KNOW exactly what is going on in your body, I wouldn't worry about it. Since you get a positive feedback from your body to take it out, that is all you really need to know. Gluten and Dairy are not that good for you anyway, so you are not losing anything.



monty
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12 Sep 2007, 9:16 am

TheMachine1 wrote:
nicklegends wrote:
I drink half a gallon of milk a day and absolutely love bread. It'd be tough to switch out of it for a bit, but perhaps I should give it a try.


Many years I drank that much milk to. It was my primary source of food.


Same here. Growing up I had two glasses of milk with every meal, milk for snacks.



monty
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12 Sep 2007, 9:34 am

conduit wrote:
I guess I’m sneaking in through the back-door here a bit. I’m interested in this discussion because I was recently being tested for celiac disease and had a very positive experience on a gluten free diet. Problem is, most of the ways in which the diet worked for me were not consistent with celiac disease.


It doesn't have to be celiacs disease. Celiac is a particular disease where the the immune reaction is concentrated in the little villi of the intestines. There can be other types of immune reactions in any part of the body. My wife's thyroid swells within a few minutes of eating any trace of gluten. She has hasimoto's disease - (autoimmune thyroiditis) and about 30-40% of such people respond very well to gluten free diets, regardless of the whether they have celiac's or not.

We know that food allergies can perturb the blood-brain barrier. We know that they can trigger the production of antibodies against nerve protein. We know that neurotransmitter functioning can be disturbed by food allergies. How much of asperger's or ASD is caused by food allergies? We don't know that. We do know that some people improve when their diet is modified, and this seems to me to be potentially the most direct form of treatment possible.

It isn't a cure. It may not work for everyone - there may be lots of different ways that autism is triggered. And we don't know that simply removing gluten or casein is enough - there could be many different antigens that cause the reaction, and it may vary considerably from person to person.

Once an autoimmune condition develops and has changed the body for years, changing the diet may or may not have quick effects. A diet may slow or stop further progression, even if it does not reverse it or cause immediate improvement.


Quote:
J Neuroimmunol. 2002 Aug;129(1-2):168-77.

Erratum in: J Neuroimmunol 2002 Sep;130(1-2):248.

Antibodies to neuron-specific antigens in children with autism: possible cross-reaction with encephalitogenic proteins from milk, Chlamydia pneumoniae and Streptococcus group A.
Vojdani A, Campbell AW, Anyanwu E, Kashanian A, Bock K, Vojdani E.

Section of Neuroimmunology, Immunosciences Laboratory, Inc., 8693 Wilshire Boulevard, Suite 200, Beverly Hills, CA 90211, USA. [email protected]

We measured autoantibodies against nine different neuron-specific antigens and three cross-reactive peptides in the sera of autistic subjects and healthy controls by means of enzyme-linked immunosorbent assay (ELISA) testing. The antigens were myelin basic protein (MBP), myelin-associated glycoprotein (MAG), ganglioside (GM1), sulfatide (SULF), chondroitin sulfate (CONSO4), myelin oligodendrocyte glycoprotein (MOG), alpha,beta-crystallin (alpha,beta-CRYS), neurofilament proteins (NAFP), tubulin and three cross-reactive peptides, Chlamydia pneumoniae (CPP), streptococcal M protein (STM6P) and milk butyrophilin (BTN). Autistic children showed the highest levels of IgG, IgM and IgA antibodies against all neurologic antigens as well as the three cross-reactive peptides. These antibodies are specific because immune absorption demonstrated that only neuron-specific antigens or their cross-reactive epitopes could significantly reduce antibody levels. These antibodies may have been synthesized as a result of an alteration in the blood-brain barrier. This barrier promotes access of preexisting T-cells and central nervous system antigens to immunocompetent cells, which may start a vicious cycle. These results suggest a mechanism by which bacterial infections and milk antigens may modulate autoimmune responses in autism.



loli
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16 Jul 2010, 8:50 am

yes I eat gluten free. it help my digestion problems . casein and soy and hfcs cause me aggravation of anxiety and my mom say worsen my autism symptoms. msg and chemicals in cleaners and perfumes are the worst though . I get hot and red and itchy and can't thinking properly i feel dazed in a bad way in .
I am good about avoid gluten msg and chemical but every chance i get i eat ice cream



gnomederwear
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16 Jul 2010, 10:38 am

I do do GFCF for my daughter, who has moderate to severe autism. She's 3 right now and she's had chronic diarrhea and loose stools up until just a week ago. I had to remove a bunch of foods from her diet that were causing problems. Soy, eggs, and chicken have also been removed. Needless to say, this has been a lot of work for food preparation because NOTHING processed can be used, as anything processed typically contains one of the problem ingredients (gluten, casein, soy, or eggs).

Soy has been the biggest problem one. It caused her speech apraxia. Before removing soy, she had so much trouble making any sounds with her mouth. She was completely silent until almost 3, when I removed casein and her words are just beginning to form now (she makes attempts at sounds now and her language development is at about 12-18 months). It will take some time and work before all of the effects of soy work its way out of her system and before her speech can catch up to her peers. It was like night and day when I stopped soy and milk for her. I've stopped soy in our household altogether and this means we cannot have processed foods in our house. It's made meals and snacks quite challenging.

Her stomach has been quite damaged by the reactions to soy (I was unable to isolate it to soy until only recently). It will take some time before it heals and she can drink milk again. I'll probably keep her off soy and always tell her to never have soy. I think it was an allergic reaction that caused the characteristics to present themselves in a way that presents more barriers for her in communicating.



Callista
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16 Jul 2010, 10:46 am

I spent years on it when I was a child. It didn't do anything; in fact, those were some of the worse years of my childhood, though I doubt that had anything to do with the diet.

It does help some people's digestion problems. Celiac disease responds to it beautifully; and of course many people are lactose-intolerant to some degree. But all the high-quality studies we have on it tend to agree that if there's no celiac disease or lactose intolerance or allergy present, then the diet doesn't affect autism.

The illusion that it (and many other useless supplements, diets, and therapies) does help probably comes from the way autistic people often gain new skills rather quickly, and from the stereotype that we cannot learn unless some kind of intervention enables it.

From LB/RB: GFCF Of No Benefit
(Links to the actual study can be found there too.)


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gnomederwear
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16 Jul 2010, 10:55 am

monty wrote:
It isn't a cure. It may not work for everyone - there may be lots of different ways that autism is triggered. And we don't know that simply removing gluten or casein is enough - there could be many different antigens that cause the reaction, and it may vary considerably from person to person.

Quite right, monty. GFCF is not the ultimate answer. In my house, my 20-month-old son's "trigger" is rice. When he eats rice, he loses eye contact, becomes very reserved (he's normally very outgoing). The GFCF diet does not exclude rice. I began noticing that he was showing signs of autism about 3 months ago. I wracked my brain trying to figure that one out. He was already GF because I feared cross-contamination because his sister is GFCF. Everything was replaced with rice. I began noticing he was slowly walking more on his toes, twirling round and round, losing words, progressively spacing out a lot, and eye contact diminished by the day. And the persistent diarrhea was there, along with the accompanying tell-tale severe diaper rash that comes with food intolerance (I've only learned this recently).

He had brown rice one day and that was the only thing that changed and the ASD symptoms became full-blown. I hadn't connected rice at that point but I thoroughly went through everything that he ate on the Ground Zero Trigger Day. I finally took out all rice and he stopped walking on his toes, flapping his hands, and his speech development resumed its course. I've removed soy for him, as well, just as a precaution. I found out through some research lately that soy is seriously really bad sh!t that should not be fed to anyone.



gnomederwear
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16 Jul 2010, 11:22 am

Callista wrote:
It does help some people's digestion problems. Celiac disease responds to it beautifully; and of course many people are lactose-intolerant to some degree. But all the high-quality studies we have on it tend to agree that if there's no celiac disease or lactose intolerance or allergy present, then the diet doesn't affect autism.

The illusion that it (and many other useless supplements, diets, and therapies) does help probably comes from the way autistic people often gain new skills rather quickly, and from the stereotype that we cannot learn unless some kind of intervention enables it.

Weren't the studies based on a small sample size?

To say that it's this or that and if the diet modification does work, then it was never autism -- then I guess we would have to redefine what autism is.

The intolerance does not have to be to gluten or casein. In my daughter's case, the food intolerance that triggered the whole cascade of events was soy. The initial reaction to soy damaged the gut and with a stupid mother like myself not knowing what a food reaction looks like, and not seeing it for what it was, there was continued exposure to the allergen for a while. The allergen wrecked havoc in the gut, caused rashes in the same places with each exposure. Yes, it caused a rash on the inside of her elbow but what we couldn't see was that it also caused "rashes" on the inside -- in her gut and on her brain -- in the parts that would control motor skills associated with speech.

The reaction in her gut leads to mucous being formed and irritation on the stomach lining. The stomach lining needed for absorption wears down and the continued irritation leads to microscopic "pores" being formed in her gut. Food that goes in travels through the system and does not digest properly because the stomach lining is damaged. The undigested milk and gluten leak through and forms peptides that have effects on the brain that mimic opium. A child on a substance like opium would obviously not be connected to the world.

It's an entire chain of events that happens that leads to some very debilitating characteristics in how autism presents itself. This is what has happened in my daughter and I see it through how her stools show. Before we removed gluten, casein and soy, she had chronic diarrhea with undigested food in there. If she ate an orange, it would come back out as an orange. No absorption. She would not gain weight.

I've put her on probiotics, enzymes and removal of a bunch of the problematic foods and now everything is getting digested and the diarrhea has stopped and she has begun to develop speech and is aware of what people are saying to her, is able to follow simple directions now, and receptive language has grown significantly.

I do not question that my daughter is very able to learn -- in fact, she is quite intelligent. But soy, gluten, and casein put blindfolds on her while she's trying to learn. Removing these things just enables her to learn more efficiently.