Join Us On GFCF Kids   |  Facebook

 


Home

 
The GFCF Diet Intervention - Autism Diet  


                 Gluten Free/Casein Free Food List
| Wheat Free Dairy Free | Shopping Guide Dietary Intervention for ASD - Celiac

    Success Stories | Frequently Asked Questions | Directory Of Website | Community Bulletin Board
 


Parent Survey GFCF Diet

Results from Two Different Studies Below:
1. The GFCF Kids Diet Survey 
2. The Autism Research Institute

The GFCF Diet 
G
luten Free Casein Free


1. The GFCFKids Diet Survey - Preliminary Results

The purpose of the GFCFKids Diet Survey is to gather and process information about dietary intervention, chiefly in the form of Gluten-Free and Casein-Free diet, for patients on the autistic spectrum.
The survey is Internet-based. It is a by-product of the work carried out by the GFCF Diet Support Group, and will be updated as more data is collected.

The survey is the result of cooperation between two volunteers:

Jørgen Klaveness — Idea, development and analysis
Jay Bigam — Computer / technical / programming / web hosting

Invaluable assistance has also been given by Dr. Karl Ludvig Reichelt, of the University of Oslo, and Karyn Seroussi, author of Unraveling the Mystery of Autism & PDD.

16. November 2001
Jørgen Klaveness
Høienhaldgt. 4
N-1532 Moss
NORWAY
jorgen.klaveness@advimoss.no

Background

Several researchers (Reichelt, Shattock, Cade, Knivsberg, Eggers, Friedman, and others) have worked on the possible connections between the incomplete breakdown of proteins (identified by the abnormal presence of opiate peptides found in urine samples), and several kinds of health problems hitherto classified as "mental." Among these problems are Autism, Pervasive Development Disorder (PDD) and Asperger’s Syndrome.

An increasing number of families have, on the strength of their hypotheses and the increasing amount of evidence pointing to these connections, have started to use dietary intervention in the treatment of their autistic / PDD / AS children.

While some of these dietary experiments have been extremely success­ful, other families have been less lucky. The survey was designed to collect as much information as possible about these dietary experiments, and to subject the collected data to whatever statistical analysis that can help to throw light on the subject.

Public Interface

The GFCFKids Diet Survey is an integrated part of the www.gfcfdiet.com website, and connected to the GFCFKids online support group. At present, this group consists of around 2000 families and professionals, all of whom are interested in or involved in dietary experiments of the type mentioned.

The common denominator for these experiments is the elimination of Gluten and/or Casein from the patients’ diets, hence the abbreviation GFCF for the Gluten-Free and Casein-Free diet.

The survey collected its information through two questionnaires, called the Main Survey form and the Infringements Experience form.

Researchers who want to look more closely at the survey’s data are invited to contact us. We would also very much like to get in touch with volunteers that can help out with the analysis of multiple variables.

Development of the Survey

The GFCFKids Diet Survey is currently the largest informal study done of the GFCF diet. The GFCFKids group has grown to more than 2000 members in two years. All of these members are in the process of gathering experience about the diet, and in due time, we hope to get most of them to share that experience through the survey. Until well-funded scientific studies are in place, this could come a long way toward answering some very important questions.

Goals

The most basic questions to which we want answers are:

What percentage of respondents get better on the diet, how much improvement can there be, and how fast does this happen?

It's been clear for a long time that while many people get excellent results with the GFCF diet, other patients are less lucky. A great number of patients seem to get very much better, very quickly. In addition to details about the above questions, we also want to know:

Why do some patients get better results than others? What are the similarities and differences between those who do well on the diet, and those who don't?

These are extremely important questions. We can’t expect to answer them fully, with the methods that we are using, but we hope to approach at least some partial answers, or at the very least to create the basis for a deeper and more thorough study of selected groups.

Method

The survey uses the Autism Treatment Evaluation Checklist (ATEC) as its main tool to measure improvement or regression.

The ATEC test sheet is developed by the Autism Research Institute, and is freely accessible on the Web at http://www.autism.com/ari/atec/index.htm

The ATEC checklist requires the respondent to answer a series of fairly straightforward questions about the patient’s problems. When this has been done, the system returns a set of numerical values that indicate the amount of problems in each of four separate sectors. The total score will be around zero for most NT (NeuroTypical) people, and it will rise to 180 if you select the "worst case" answer to every single question.

There is some degree of subjectivity about the scoring, but the test can be a useful tool for measuring improvement or regression, especially when administered by the same scorer. The general reliability of the ATEC has turned out to be quite high.  

Reliability

The main disadvantage of our method is that the respondents are not chosen randomly from those who have tried the GFCF diet for their children. They are mostly self-selected families who have had reason to believe that their children had a dietary link to their autistic behaviors. They are also those who had sufficient motivation to share their information, which is far more likely to be found in the successful cases than among the non-responders.

However, we have a high number of "beginners" on the survey, who knew nothing about the child’s response when they entered their first ATEC score. As we continue to collect data, if a sufficient number of these fill out follow-up reports, the selection error will be less of a problem and we will have a somewhat better idea of the percentage of responders in the autistic population.

The second disadvantage of the self-reporting method is that lots of beginners report that they have eliminated every trace of gluten or milk from their children's diets. This is far easier said than done, and without professional guidance, caregivers will often continue to discover hidden sources of forbidden protein in the first six to twelve months. Therefore, the group of respondents that reports "perfect" eliminations is likely to be suspect.

A third problem exists in the recognition of symptoms following an infringement episode. Unless observers are familiar with the symptoms of dietary infractions, they might not notice some of these symptoms unless they are pointed out.

Despite the imperfections of the Survey, our hope is that these results will help provide parents with the motivation they need to this intervention for their children, and to aid in the design of larger controlled studies that can provide us with more reliable data.

The Main Questionnaire

The main GFCFKids Diet Survey questionnaire has several categories of questions:

  • Information about the patient: age, number of months on the diet, ATEC scores, and blood type. They are also asked to submit their e‑mail addresses for identification purposes. The respondents are also asked to state whether they act as parents or professionals.
  • What dietary eliminations are used (gluten / milk / yeast / soy / corn / eggs / others) and to what degree (perfect / near perfect / partial / not reduced).
  • List nutritional supplements and other interventions, such as the use of ABA (Applied Behaviour Analysis).

All data are submitted on the condition that they shall be treated confidentially, and that they shall only be used for statistical purposes.

The Infringement Questionnaire

For the first four months, diet infringement experience was just one single question in the main questionnaire. However, it became evident early on that this information needed a lot of structure to it, before any analysis was possible. Therefore, a separate questionnaire has been made out on the subject of dietary infringements. The main questions on this are:

  • What kind of dietary infringement (gluten / milk / soy /...),
  • Reason (accident / intentional /...),
  • Amount ingested (milligrams / grams /...),
  • Amount of experience (once, 2‑5 times, 5‑10 times /...),
  • Type of reaction (enlarged pupils / hyperactivity / bed wetting / aggression /...),
  • Degree of reaction (none / slight / strong)
  • Delay before reaction (minutes / hours / days /...)
  • Duration of reaction (hours / days / weeks /...)
  • ATEC scores at worst point of regression

We hope that we will, in time, find patterns in the way that people answer these questions, and that these patterns will prove helpful in the diagnosis and treatment of autistic children, and in the interpretation of experimental dietary intervention.

The Control Group Questionnaire

We also have a third questionnaire, that’s meant to be answered by people who have not yet tried the GFCF diet, but who have nevertheless had some experience with the improvement rates of their children / patients.

Summary: How many get how much better, and how fast?

What rates of improvement can be expected? Improvement rates vary a lot. For the time being, we do not know why some patients undergo total changes of personality in the course of one or two weeks, whereas others have to wait for months for much less spectacular developments. This is an area that calls for serious research .

One hundred and thirty-nine respondents have filled out follow-up reports. We have divided them into six groups, based on the total percentage of change in their ATEC score.

 
Respondents
Average age at diet start
Average time spent on diet
Average change in ATEC score
Dramatic

11.5% (16)

3.0 years

18 months

-85 (82 %)

Excellent

29.5% (42)

3.3 years

13 months

-54 (62 %)

Good

27% (37)

4.7 years

8 months

-28 (38 %)

Moderate

22.6% (31)

4.4 years

7 months

-12 (16 %)

 

 

 

 

 

No result

5% (7)

5.7 years

1 month

0

Regression

4.4% (6)

5.5 years

7 months

+5 (16 %)

Clearly, age at start of diet and length of time on diet are key predictors of success.

"Sensational" Recoveries

Among the progress reports, there are five that belong in a category by them­selves. They could be called "sensational" recoveries, because they describe extremely impressive improvement in very short periods of time (two to six weeks after starting the diet). These five children lost an average of 57 ATEC points in an average of 3 weeks.

For the time being, these results should be used as inspiration, and not as examples of what is most likely to happen when one tries the GFCF diet. However, these five reports indicate very clearly that the "miracle" cases that we have heard about are not just rare, singular occurrences, and are not limited to children under two years of age.

Age At Diet Start
Weeks on Diet
ATEC Before Diet
ATEC After Diet
ATEC Points Lost

1

2

105

62

43

2

4

131

50

81

3

2

44

7

37

6

2

85

39

46

6

6

116

37

79

Conclusion

Autism is a severe, lifelong disorder with serious emotional and financial consequences. Its incidence is rapidly increasing, and its etiology is still unclear. Due to the lack of mainstream studies that identify the underlying metabolic issues apparent in some cases of autism, it is up to the caregivers of persons with autism to make decisions about treatment options based on anecdotal reports of improvement or recovery.

Although these are preliminary results from an informal survey, they add to the body of evidence that indicates that dietary intervention can be a valuable treatment option for some people with autism spectrum disorders, and in some cases, may lead to the complete reversal of autistic behaviors.

In addition, it is clear from the results that in most cases, time is a critical factor: the age of the patient at the time that the diet is implemented is a key predictor of success.

 



2
.
The Autism Research Institute

ATEC Autism Research Institute Parent Ratings of Behavioral Effects of Biomedical Interventions

ARI Publ. 34/February 2008
Parent Ratings of Behavioral Effects of Biomedical Interventions

Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116 USA

The parents of autistic children represent a vast and important reservoir of information on the benefits-and adverse effects- of the large variety of drugs and other interventions that have been tried with their children. Since 1967 the Autism Research Institute has been collecting parent ratings of the usefulness of the many interventions tried on their autistic children.

The following data have been collected from the more than 26,000 parents who have completed our questionnaires designed to collect such information. For the purposes of the present table, the parents responses on a six-point scale have been combined into three categories: “made worse” (ratings 1 and 2), “no effect” (ratings 3 and 4), and “made better” (ratings 5 and 6). The “Better:Worse” column gives the number of children who “Got Better” for each one who “Got Worse.”

There are three sections: Drugs, Biomedical/Non-Drug/Supplements, and Special Diets. Download a one-page Adobe (.pdf) file containing all three sections.
 

Jump to:

 


SPECIAL DIETS 

Special Diets


 
Got
Worse
A
No
Effect
Got
Better
Better:
Worse
No. of
Cases
B
Candida Diet 3% 41% 56% 19:1 941
Feingold Diet 2% 42% 56% 25:1 899
Gluten- /Casein-Free Diet 3% 31% 66% 19:1 2561
Removed Chocolate 2% 47% 51% 28:1 2021
Removed Eggs 2% 56% 41% 17:1 1386
Removed Milk Products/Dairy 2% 46% 52% 32:1 6360
Removed Sugar 2% 48% 50% 25:1 4187
Removed Wheat 2% 47% 51% 28:1 3774
Rotation Diet 2% 46% 51% 21:1 938
Specific Carbohydrate Diet 7% 24% 69% 10:1 278

A. “Worse” refers only to worse behavior. Drugs, but not nutrients, typically also cause physical problems if used long-term.
B. No. of cases is cumulative over several decades, so does not reflect current usage levels (e.g., Haldol is now seldom used).
C. Antifungal drugs and chelation are used selectively, where evidence indicates they are needed.
D. Seizure drugs: top line behavior effects, bottom line effects on seizures.
E. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.

DRUGS

Note: For seizure drugs: The first line shows the drug’s behavioral effects; the second line shows
the drug's effects on seizures.
 
 
Got
Worse
A
No
Effect
Got
Better
Better:
Worse
No. of
Cases
B
Aderall 43% 25% 32% 0.8:1 775
Amphetamine 47% 28% 25% 0.5:1 1312
Anafranil 32% 38% 30% 0.9:1 422
Antibiotics 33% 53% 15% 0.5:1 2163
AntifungalsC: Diflucan 5% 38% 57% 11:1 653
AntifungalsC: Nystatin 5% 44% 50% 9.7:1 1388
Atarax 26% 53% 22% 0.9:1 517
Benadryl 24% 50% 26% 1.1:1 3032
Beta Blocker 17% 51% 31% 1.8:1 286
Buspar 27% 45% 28% 1.0:1 400
Chloral Hydrate 41% 39% 20% 0.5:1 459
Clonidine 22% 31% 47% 2.1:1 1525
Clozapine 37% 44% 19% 0.5:1 155
Cogentin 19% 54% 27% 1.4:1 186
Cylert 45% 36% 20% 0.4:1 623
Deanol 15% 57% 28% 1.9:1 210
DepakeneD: Behavior: 25% 43% 32% 1.3:1 1071
DepakeneD: Seizures 11% 33% 56% 4.8:1 705
Desipramine 34% 35% 31% 0.9:1 86
DilantinD: Behavior 28% 49% 23% 0.8:1 1110
DilantinD: Seizures 15% 37% 48% 3.3:1 433
Felbatol 20% 55% 25% 1.3:1 56
Fenfluramine 21% 52% 27% 1.3:1 477
Haldol 38% 28% 34% 0.9:1 1199
IVIG 10% 44% 46% 4.5:1 79
KlonapinD: Behavior 28% 42% 30% 1.0:1 246
KlonapinD: Seizures 25% 60% 15% 0.6:1 67
Lithium 24% 45% 31% 1.3:1 463
Luvox 30% 37% 34% 1.1:1 220
Mellaril 29% 38% 33% 1.2:1 2097
MysolineD: Behavior 41% 46% 13% 0.3:1 149
MysolineD: Seizures 19% 56% 25% 1.3:1 78
Naltrexone 20% 46% 34% 1.8:1 302
Paxil 33% 31% 36% 1.1:1 416
Phenergan 29% 46% 25% 0.9:1 301
PhenobarbitalD: Behavior 47% 37% 16% 0.3:1 1109
PhenobarbitalD: Seizures 18% 43% 39% 2.2:1 520
Prolixin 30% 41% 29% 1.1:1 105
Prozac 32% 32% 36% 1.1:1 1312
Risperidal 20% 26% 54% 2.8:1 1038
Ritalin 45% 26% 29% 0.7:1 4127
Secretin: Intravenous 7% 49% 44% 6.3:1 468
Secretin: Transdermal 10% 53% 37% 3.6:1 196
Stelazine 28% 45% 26% 0.9:1 434
Steroids 35% 33% 32% 0.9:1 132
TegretolD: Behavior 25% 45% 30% 1.2:1 1520
TegretolD: Seizures 13% 33% 54% 4.0:1 842
Thorazine 36% 40% 24% 0.7:1 940
Tofranil 30% 38% 32% 1.1:1 776
Valium 35% 41% 24% 0.7:1 865
Valtrex 6% 42% 52% 8.5:1 65
ZarontinD: Behavior 35% 46% 19% 0.6:1 153
ZarontinD: Seizures 19% 55% 25% 1.3:1 110
Zoloft 35% 33% 32% 0.9:1 500

 


BIOMEDICAL/NON-DRUG/SUPPLEMENTS


 
Got
Worse
A
No
Effect
Got
Better
Better:
Worse
No. of
Cases
B
CalciumE: 3% 62% 35% 14:1 2097
Cod Liver Oil 4% 45% 51% 13:1 1681
Cod Liver Oil with Bethanecol 10% 54% 37% 3.8:1 126
Colostrum 6% 56% 38% 6.1:1 597
Detox. (Chelation)C: 3% 23% 74% 24:1 803
Digestive Enzymes 3% 39% 58% 17:1 1502
DMG 8% 51% 42% 5.4:1 5807
Fatty Acids 2% 41% 56% 24:1 1169
5 HTP 13% 47% 40% 3.1:1 343
Folic Acid 4% 53% 43% 11:1 1955
Food Allergy Treatment 3% 33% 64% 24:1 952
Hyperbaric Oxygen Therapy 5% 34% 60% 12:1 134
Magnesium 6% 65% 29% 4.6:1 301
Melatonin 8% 27% 65% 7.8:1 1105
Methyl B12 (nasal) 15% 29% 56% 3.9:1 48
Methyl B12 (subcutaneous) 7% 26% 67% 9.5:1 170
MT Promoter 13% 49% 38% 2.9:1 61
P5P (Vit. B6) 12% 37% 51% 4.2:1 529
Pepcid 12% 59% 30% 2.6:1 164
SAMe 16% 63% 21% 1.3:1 142
St. Johns Wort 18% 66% 16% 0.9:1 150
TMG 15% 43% 42% 2.8:1 803
Transfer Factor 10% 48% 42% 4.3:1 174
Vitamin A 2% 57% 41% 18:1 1127
Vitamin B3 4% 52% 43% 10.1:1 927
Vitamin B6 with Magnesium 4% 48% 48% 11:1 6634
Vitamin B12 (oral) 7% 32% 61% 8.6:1 98
Vitamin C 2% 55% 43% 19:1 2397
Zinc 2% 47% 51% 22.1:1 1989

A. “Worse” refers only to worse behavior. Drugs, but not nutrients, typically also cause physical problems if used long-term.
B. No. of cases is cumulative over several decades, so does not reflect current usage levels (e.g., Haldol is now seldom used).
C. Antifungal drugs and chelation are used selectively, where evidence indicates they are needed.
D. Seizure drugs: top line behavior effects, bottom line effects on seizures.
E. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.

More Valuable Information from Survey Conducted by The Autism Research Institute


Disclaimer: The content on this website is not medical advice.
Consult  with your medical practitioner for all medical advice.

l

 




 
 





 
 
   

 




 

 
 




 
 
   
 
 
 
   
 

 


 

 

 

   
   
  products@gfcfdiet.com | The GFCF Diet Support
© Copyright  by The GFCFDiet.com All Rights Reserved