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Hi, new to the board and hoping to find others that have stringently followed the gfcf diet for their children without success. We made a six month commitment to the diet for my 2.5 yr old son, diagnosed with autism. We have been extremely dedicated and thorough in eliminating all gluten and casein from our house (including soaps,shampoos,lotions,play doh, etc.) for the past 8 months. As far as dairy, (we pulled it first for 8 weeks) , the gluten for 6 months) we believed there was a slight increase in eye contact but no other notable changes. Since eliminating gluten, we have seen no dramatic changes at all. I am certain that we did the diet correctly and my son ate very healthy alternatives with supplements and drank only rice milk. Feeling rather discouraged, I have searched online to find other parents that have implemented the diet properly without seeing any improvement. VERY hard to find a forum where people actually discuss the disappointment of the diet NOT working for them! I genuinely believe that it works wonders for a subset of children, but unfortunately it doesn't appear that my son is one of them. Questioning myself because our 6 month commitment is over and feeling guilty that we may stop the diet. My son has made some gains with therapy but not the behavioral, verbal or type of anecdotal changes I'd heard of. Anyone else realize that the diet was not for them? Hi,We did the diet religiously for almost a year. Frankly, we saw no gains. It does not work for all kids. He has made much better gains through therapy than through diet. I was really disappointed, because I have heard of the diet doing great things for kids, but I guess it is just not all kids. We still do rice milk, but let the gluten back into the diet. I would not feel guilty, you gave it a try. Harriet I had tried the GFCF diet for my dd a few years ago and then went back off. Then as I restarted last year with the support of our DAN doctor, I realized that my dd has yeast overgrowth. So, although we stayed away from casein and gluten on the first try, I was inadvertantly feeding the yeast by letting her have high sugar food and fermented foods. I have also recently found out through an IgG test that she is sensitive to other foods too (e.g. eggs, soy). So it is not just casein and gluten for my dd. So, if possible, you might want to get some testing done to find out more information. May show something or nothing! But if I had to do it again, I would have done this testing a few years ago and then decide what to do. Best wishes. _________________ mom to 9 year old boy/girl twins (Asperger's/PDD-NOS) Thanks Harriet and mbmom...we did have my son igG and Ige tested, nothing remarkable showed up except a variant in the igE number that was consistent with his history of eczema. We haven't had tests for yeast overgrowth but as mentioned, he does have some eczema and loves fruit more than any other food...maybe that is an indication? We had seen a DAN doctor in our area for a short time and it became clear, in very short order, that he was scamming us. We have considered finding another doctor to help us navigate other possibilities. mbmom- have you noticed any big improvements now that you're addressing the yeast issue? Did you kill the yeast with meds or with diet elimination? Sometimes the only way to see that the diet is working is to take him off of it. My girl, too, didn't seem to benefit from the diet as far as I could tell, but everytime she gets forbidden food, she gets loose stools, stims more, loses her ability to relate to us. So we have not stopped it. nycoco-We are trying to control the yeast with Saccharomyces boulardii and probiotics right now. Nystatin did nothing. Also drastically reducing her sugar and juice has really helped. Whenever she has too much sugar , she gets giggly and spacey. I do not know if liking fruit is a sign of yeast or not. But yes, she loves fruit. I have not eliminated fruit, but have limited it. Yes, we have seen huge improvements since restarting GFCF /low sugar diet, along with other biomed. interventions. Hoping for further progress as we continue refining her diet and work on eliminating the yeast. A good book to read is Children with Starving Brains by Jaquelyn McCandless. ____________________ mom to 9 year old boy/girl twins (Asperger's/PDD-NOS) Not much time to post but have you looked into the SCD diet? Very specific starch removal diet sometimes works better for our children than gfcf alone. Check out http://www.pecanbread.com for more info on this diet. best of luck. Claire in Canada Diets don't always help but there are other biomedical interventions out there. It's frustrating, but sometimes it's just a case of going through different treatments to see which one works for your child. Did you see a DAN doctor?Claire's right, the SCD eliminates all starches and complex sugars from the diet, not just starches containing gluten. However, the SCD does allow casein in the diet. Elaine Gottschall, who created the diet, theorized that starches can cause an imbalance of gut flora because yeast and bacteria in the gut feed on starches. Eliminating starches allows the gut to rebalance itself and to start functioning properly. It may be worth a try, since you are already used to using an elimination diet.
Please do not feel guilty. It didn't work. Perhaps, as a last-ditch effort, go with some of the suggestions here. But if those too do not work, then simply put your son back on a regular, healthy diet. The diet will just be one more thing for you that you don't have to worry about. Don't distress. There are so many different approaches to therapy and biomedical interventions. Maybe other approaches are what you need.
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