Asperger's Syndrome Community
How do you find out more information about GFCF diets??
About This Community:

This forum is an un-mediated, patient-to-patient forum for questions and support regarding Asperger Syndrome issues such as: Balance, Behavioral Issues, Causes, Characteristics, Classification, Clumsiness, Communication, Diagnosis, Gait – Walking, Genetics, Medications. Parenting, Prognosis, Restricted and repetitive interests and behavior, School Issues, Screening Sleep Disorders, Social interaction, Speech and language, Treatment

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

How do you find out more information about GFCF diets??

I have heard that the GFCF diet will help my son with his behavior and eye sight. Does anyone on here stick to this diet? Does it work? How do I find out more about it and where do I buy the foods??
Related Discussions
10 Comments Post a Comment
Blank
365714_tn?1292202708
I found this article a while ago that described the GFCF diet:
http://www.bbbautism.com/e.news/vol.4/vol_4_iss_1_gfcf_plaintext.htm

I found it very interesting. I've not tried the diet so I can't say if it really would help or not.
Blank
637356_tn?1301928422
thank you I will check out this site.
Blank
Avatar_f_tn
There is a lot of controversy surrounding this.  A large study was done that found that children with autism disorders were producing the same distribution of anti-gliadins as the regular population.  Some people don't believe in hard science but I do.  I am nt one to believe in ancedotal evidence.  For instance, everyone is under the impression that social groups help our kids - the clinical evidence is that they make friends in the group (which has some benefits) but it doesn't translate from the specific (that group) to the general (any new situation).  So NYU stopped doing social groups but school psychologists think they have great value.  

Sometimes mom's observations are correct.  We were the first to point out to his shrink that he was having trouble with certain food colorings (like orange soda) and our doc poo-pooed it until a big study came out in Lancet that found out that mother's intuition was right.  At least he apologized.  But since many of are the believe that a gf diet will help - it can't hurt.

Having said all of that, my son was in a study with the Celiac Center to look for a connection between children with severe ADHD and celliac.  Only children who were diagnosed with severe ADHD and carried the celiac genes were able to participate.  Though the rate of celiac was the same as the general population a very high number of the children (including my son) were found to be gluten intolerant.  Gluten it seems can make an opiate like chemical in their bloodstream.  Gluten free diets help these kids come off their high.  And yes it has helped greatly but all he wants is gluten.  Think about it. all the drug induced euphoria you want is only a loaf of Wonder Bread away.  

If you really think there is a gluten problem take your kid to the pediatrician and have a simple blood test for his anti-gliadin number.  Anything over 20 and you have a gluten intolerance problem.  The average is about 10.  Everyone has a slight reaction to gluten but over 20 is considered going into the red zone.  Going gluten free is very expensive and not at all pleasant or easy to do - especially for a child.  In fact, even when you have a child who is obviously gluten intolerant but not celiac the doctors tell you to let them have a little gluten.  There are a lot of support groups that help families find new products as well as stores that specialize in gf.  Me and my sister spend a lot of time finding and sending gf products to each other.   I just paid $24 for 24 little cookies, the little pizzas cost about $5-7 a piece, 7 for 6 bagels, the gluten-free chicken nuggets are a bit cheaper -  I can usually find them at whole foods for a reasonable price.  I spend about $100/wk on his food alone because he as Asperger's and he is so picky.  My husband is about to take a course at the Culinary Institute of America (being Greek he is a far better cook than his Irish-American wife) in hopes of lowering our food costs by learning to bake with the odd flours ourselves.   The food, unless you spend a lot of money, tastes like you are eating sawdust.  Rice and rice noodles are cheapest part of the diet.  Sam has learned to love Avoglemeno soup.  

The cheaper things to feed your kid (if he'll eat them) is vegetables and fruit.  we have learned to make fairly good french fries - you probably will need to invest in a good deep fryer becaue you'll be working with some funky coatings that won't stick.  We are also bout to purchase a new breadmaker that has a gf bread cycle becaue I'm tired of paying $7 a loaf for bread - more if it needs to be shipped.  Luckily Sam has no problems with milk because we would be lost without dairy.

That s the reality of a gf lifestyle when you have a kid involved. Most of the adults I know just use potatoes and rice to get by and skip the bread issue altogether.

Thank God Heinz ketchup is gluten-free.  At least we can do eggs and hashbrowns for breakfast.  

Wish us luck on his latest celiac test - it is due back today - every year without an endoscope is a good one.

Every 2 years he goes in for a Prometheus test ($290) because he is positive for the genes, his anti-gliadins are high and we have celiac in the family.  The Prometheus is the most accurate but most insurances won't pay for it because there are cheaper blood tests out there.  Gene testing is extra - which I will probably have done on my girls knowing the family history of celiac.  
Blank
637356_tn?1301928422
Thank you for your insight into the diet. One of the boss's where I work swears to it but until our finances get better I will just have to watch his sugar intake and keep helping him the way I have always done.

About mother's intuition, I knew my son had autism long before he was diagnosed. Matter of fact I fought to have him tested. I was told he was fine. I was told they see a memory problem but not autism. Then finally I found a dr that said a mother knows her child and sent me to a specialist who diagnosed him with asperger. Once I had that report in hand I contacted his school and wouldn't leave until the process was started to have him tested at school. They also diagnosed him with asperger syndrome.

Good luck with the test!!
Blank
Avatar_f_tn
We have a lot of in put from the relatives, and friends that have really encouraged us to put himon a gluten-free/lactose-free diet. His mom was really stressing out and finally had quit because she was making this stuff for the whole family. Now we just make 1 gluten free chocolate cake w/ a nice thick choco frosting, and cut in nice sized peices. I freeze the whole cake til the frosting is about like fudge and then wrap each peice in saranwrap and keep in the freezer. We try to keep a few kinds of glutenfree cookies on hand right now, and theres a fair amount of candies that are gluten free. The other night we went Christmas caroling and didn't think about the fact that someone might give us a snack. It happened and he ate a gluten cookie. There are times like that where we will allow it in order to prevent a stressful situation.

We did NOT go dairyfree .....(can someone clue me in on the difference between lactose and casine and dairy? I really don't know the correct term, but I just think milk and milk derivatives.) But we see enough difference in him with the gluten free that we're not ready to try the stress of adding dairyfree to it aas well unless we get him tested sometime.
Blank
Avatar_f_tn
The cassein is a protein in milk products.  Many people who do this dietin hopes of helping their cild's autism also feel that cassein is one of the villians.  

I personally think that these parents schould all get blood tests.  We had suspected at 6 that he was having trouble with gluten and we were right.  His number was at 19 which was borderline for intolerance.  Two years later it was at 28.  

It is amazing how many times I have told people to get the blood tests (1 out of 135 Americans have Celiac and a lot more are gluten intolerance which makes a person feel horrible and loopy all the same) but they say that there kid can't handle a blood test.  Yet they will happily put them on a hard diet that makes most kids nuts.  We were lucky in that the family has a history of celiac so it has been something to watch for - and our family gets hit more with the neurological stuff than the digestive problems - which seems to be how the disease falls.

All I'm saying is that the scientific evidence (which is more measurable than most people believe) is not out there to support the ancedotal evidence.  That being said there a real celiac and gluten intolerance epidemic out there - and especially if you are of Irish or Northern European stock you have a much higher rate of possessing those lovely little genes that can make it all possible.
Blank
365714_tn?1292202708
I'm likely to believe that as well, that an underlaying gluten intolerance is more widespread with or without autism. I agree that it is a good idea to run tests before jumping to the diet.
Blank
Avatar_f_tn
We use products from Bob's Red Mill. They have alternative flours, etc. But its more ingredients. They do have a few mixes like pancake,or pizza that turn out very well. You can get 1-2 lb packs at HEB. They also have other glutenfree foods there in the same iasle. But not everyone is priveleged to have an HEB. A lot of rice or corn products can be glutenfree. Not all of them are. He likes those mini ricecakes  that come in chocolate, cheese, and various other flavors. If you enjoy cooking/baking you can get large quantities right from Bob's Red Mill. They have awesome customer service. 1-800-349-2173 or you can go to their website, bobsredmill.com. I had researched it some when I had my bakery going. I don't have all the research with me, but I do know that at the time I was researching, this was the best.
Blank
Avatar_f_tn
Another sort of quick test is take your kid's pulse before he eats.  Give him a loaf of French bread  to eat - oddly gluten intolerant people can usually handle eating a loaf with no problem (it is their drug of choice).  take pulse an hour later - it is usually elevated.  That was the ome test that sent my son for the blood tests originally.
Blank
637356_tn?1301928422
wow thank you! I will try that with him. It will be a while though he is sick with upper respitory infection and meds has his heart rate a little elevated anyway.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Asperger's Syndrome Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Children's Development Answerers
803938_tn?1403751853
Blank
Ecologic
Planet Earth