Janice, My son is very mildly affected by ASD. Below is a post that I posted a few weeks ago. Please be careful to research what you are getting into and be careful not to waste your money.
Posted:
I've been intensely researching biomedical intervention on the internet. I have found the following website that I think has finally helped me make up my mind on the matter:
http://www.quackwatch.com/search/webglimpse.cgi?ID=1&que ry=autism
The following excerpt from this website sums up a lot of what I have found on the web - particularly the last sentence:
Pseudoscientific treatments tend to be associated with exaggerated claims of effectiveness that are well outside the range of established procedures. They are often based on implausible theories that cannot be proven false. They tend to rely on anecdotal evidence and testimonials, rather than controlled studies, for support. When quantitative data are considered, they are considered selectively. That is, confirmatory results are highlighted, whereas unsupportive results are either dismissed or ignored. They tend to be promoted through proprietary publications or Internet Web sites rather than refereed scientific journals. Finally, pseudoscientific treatments are often associated with individuals or organizations with a direct and substantial financial stake in the treatments.
We do have the financial resources for biomedical interventions, but I just can't find anything credible to spend it on. My son is doing so very well with
I'm pretty sure I read that it is fine to be GFCF for any lab testing. Whatever peptides they are looking for will still show up in his blood and urine. If you see a big difference with your son, let him remain on the diet. You don't want to have to have him "withdraw" from the foods twice. My daughter has been casein free for 3 weeks, and Gluten free for about 5 days. We can see differences already. I haven't made a DAN appointment yet, but thought it was worth a try. Good luck with the Doctor and let me know how it goes with him!
Heatherfeather,
My daughter actually never appeared to have any food intolerances/digestive issues. She was and still is however a very picky eater. She only eats hard things like cereal, crakers, toast, and hotdogs. She was really wanting dairy and wheat/gluten items only...no fruit, etc. I just tried the diet, because I thought maybe these were cravings that were possibly harming her. I have seen changes...not "recovery" type changes, but more eye contact, bringing me toys, etc. She hasn't been on it very long, and I read that it can take months to get gluten out of your system. We are going to stick with it for a while to see if we can get anymore improvements with language,etc. She has never has a problem holding weight on, as she used to drink TONS of whole mik. I now have her on Darifree with some vitamen supplementation. Hope that helps!
I have just learned about the diet through another mother on the internet. I had never heard of DAN! doctors and biomedical treatment before, just behavoiral therapies. I started the GF/CF diet immediately and schedule a DAN! doctor visit for Sept.5. We are on day three of the diet. Since from what I understand a food allergy test is done first. Is that the same things as a IgG and IgE test? And what are the requirements before the testing? Does my son have to eat the gluten and casein in order for the test to show if he shouldn't have it? I just hope I am doing the right things now. Do I wait till the doctor visit to start the diet? It is just that Sept. 5 seems so long away. Please help guide me. My son is four in a week and is non verbal. I wish I had heard of this sooner. JANICE
I've heard really contradictory things about whether tests can accurately tell if a child needs to be GFCF. I wish there was a simple, cheap test, because I'm still on the fence about doing the diet, and my husband is pretty reluctant. My son doesn't have any obvious signs of food intolerance other than the ASD, and his diet is so limited already...
45Girls--Did your daughter have any signs of problems with her previous diet?
Thanks!
Our allergist is a dan dr. He tested the allergies by skin test and the igG/igE level. He also looked at thyroid level/parasites/viruses/Epstein bar/gi processing. He wanted a Candida/metals/pathways tests also. Never done these 3 !He can't have oats/corn/gbeans/peas/yeast/fish. He did shots for a while. He hated them and Dad quit paying the shipping costs so the dr. quit sending the serums for me to give him. They did help him out though. He takes lots of supplements now to help out now. Bcomplex/aminoacids/eproil/valerian root/sfdiet/glyconutrients. It all does help out. We were told by the NP he has dyslexia also which 3 other said not to.
Janice, Having the conclusive food allergy tests results is good, but you can always do an "elimination test" for free: meaning, do the diet (eliminate C & G) for about 3 to 4 months then reintroduce the foods one at a time and look for reactions or changes in behavior. In our situation, we did DAN! tests first that did not indicate an issue, however, we went forward with the elimination diet anyway and noticed improvements in sleep with C gone. G does not seem to be an issue. Probiotics (meant to heal the gut) and B12 (some kids "respond" with speech) are something to google and look into - they are common route options with a DAN! dr. Good Luck!
This not a issue for all anyhow!We eat lots of protein/vegs/fruits. Some think Dan Dr.'s are a quacky way to go! I disagree with Non Dan dr.'s! Our's is a allergist/immune system dr. I even found endo. dr.'s no help either.My gm does my thyroid med.
I've always read that it's best NOT to remove gluten/casein prior to testing in order to get accurate results. I also know that these proteins may stay in the body for very long periods of time, even after removing them from the diet, so...
I'd still suggest just waiting to remove them so you can get an accurate test reading, unless you feel they are causing severe negative effects, in which case the test would be pretty useless...if the effects are that noticeable, just go gf/cf and save yourself the time/money of an allergy test. Even if your child is NOT "allergic" to these substances, they may still be having a negative, addictive effect on his/her brain due to the fact that they break down to opiate-like compounds in the bodies of some people. If your child has leaky gut, large pieces of food and other such particles could be getting into the bloodstream and allowing proteins like gluten and casein to cross the blood-brain barrier. No matter the test results, you should consider a gf/cf diet for a number of reasons, many of which don't always show up on tests.
After all, there's no harm in TRYING it, right? :)
Thank you all for everything! I will continue doing the GF/CF diet. I am trying to be careful of the biomedical side because I know it is expensive but so far with the diet alone I have seen big improvements: he actually plays with Dad now, way more eye contact, his eyes are not so glassy anymore, and he has repeated some sounds of words I say. I will let everyone know how the doctor visit goes. Thanks!
We did the GFCF diet for a year and then added in enzymes and faded out diet all together and like all of you we didnt get miracles but she did lose that far away look and had much more awareness of us..since we did ABA also I cant swear its all the diet but probably a combination..we had her tested first and she was high in the glutien/casien peptides and yeast..I have no regrets doing the diet as I went to a very respectful Dan doctor who had a son with autism too..he was very sincere and it was nice to have a professional giving us hope and things to do for her:) I am a firm believer in ABA though and if I could only do one thing I would choose it 100% over all other diets, therapies, supplements..IMHO:)
Good luck!