Have you tried Gluten/Casien Free diet? | Autism PDD
I have a 6 year old autistic boy. I tried the diet before and i saw an improvement, i had to stop the diet because his father and grandmother weren't following it. I was wasting my time. This was in 2000 until this day i can' t give him cow milk he goes crazy, I give him soy milk.
Of the 4 neurologist's we have seen, the first one said he didn't discourage the GFCF diet, but he had never seen it make a difference for a child. This neurologist sees a large number of kids with autism here in Alabama. The second neurologist is a DAN doctor here in Alabama, and felt that diet had helped a large portion of the kids he treated. The third neurologist was the one in Boston, he said that diet helps about 25% of kids with autism. He also sees a large number of children with autism in his practice. The fourth neurologist doesn't specialize in autism, and doesn't see many in her practice.
Thanks for this info- even if it only helped 1% of kids- I would think it would be worth a try.
Hi.
I have not specificallly tried this particular diet but it was the information i read on the diet that helped us tremendously....It was researching this particular diet that I found out about starch can affect certain children with Autism.....my Curtis who is 9 1/2 ate mostly starches.....very few meats and vegetables were not on his list things he would even try.........I found out that there is a certain reaction to the gluten and casien in food that can cause a child to have "goose flesh" like symptoms on their arms or sometimes even be diagnosed with eczema........Curtis had this on his arms and was diagnosed with both eczma and goose flesh..........I changed his diet to add more proteins, and veggies and cut way low on the dairy , and starches..........it made a tremendous difference in him within 2 weeks........no more gooseflesh or eczma........his behaviour improved temendously.........even his therapist couldn't believe the 380 degree turn (his words) in Curtis' behaviour.......I do notice now if he drinks alot of milk or eats alot of cheese or eats alot potatoes .........you could note the difference within a few hours of his behaviour............the goose flesh also returns........
So this was as close to my experience with this diet as i have......but I do give this diet the credit for leading us to an answer...............Curtis was diagnosed PDD-NOS at the age of 5..........We have been using this diet since he was 6.....He is not on any type of Meds....as he was tried on Adderol XR and had such an adverse reaction that it red flagged all stimulants for him..........but Curtis has done extremely well with this..........I hope this helps........Good luck to you.........I would reccomend the diet as I think it is a very useful tool ............Terri
[QUOTE=mom1221]I believe in my heart that every parent with an autistic spectrum child is negligent if they don't try this diet and follow it like your childs life depends on it. I have seen so many children make remarkable and dramatic changes on this diet that I can never put into words how important I feel it is!!!!!!! [/QUOTE]
Im Sorry Jo Ann.... Maybe because I have had a real bad past several weeks.... but I was hurt by your statement that you believe EVERY parent of an ASD child is NEGLIGENT if they dont try the Gluten Free Casein Free diet. I dont mean to sound nasty or anythign but it really bothered me.
First off some can not AFFORD to do the GF/CF diet due to finances. SOme cant provide the strictness of the diet due to maybe free lunch at school, the other parents involvement and refusal in a divorce situation,... There are NUMEROUS reasons. SO to call every parent negligent is wrong in my opinion. Each child is different, each child responds differently GF/CF Diet isnt for everyone is does help some but not all!
Supposedly supplements help alot of kids some people SWEAR BY THEM, it doesnt mean we're all neglegent for not trying it.
Some people see child psyc, some see behavioral specialists, some do ABA, some see developmental pediatricians, some see child neurologists..... Some do testing with blood and urine and MRI and CT scans and EEG's and on and on..... it doesnt mean others who dont do it all are neglegent.
I believe we all owe it to ourselves and our kids to educate ourself as best we can regarding our childs diagnosis and ways to help. But you CAN NOT believe everything we read or see.
I read about the diet, I tried to educate myself, I researched and talked to Nancy Cale who is the VP of Unlocking Autism who has an autistic grandson who does the diet. I realized for me, and for my family, we could NOT follow the diet to the letter and without being 110% involved and consistent IT WONT WORK! So we dont do and have not tried GF/CF diet. That DOES NOT MEAN I AM NEGLIGENT!
Now there is TESTING that can be done to see if your child has an allergy to Gulten Or Casein,......... WHich is the idea behind the diet that the kids are allergic to it and it causes alot of their symptoms and problems.
Check Out http://www.greatplainslaboratory.com/gluten-casein.html OR http://www.greatplainslaboratory.com/foodallergy.html for more info.
We have been on the diet for a few months. Here are my answers:
Did you see changes? Big changes...small changes..no change? No changes
Were you very strict in implementing the diet removing 100% of
glutens/casiens 100% of the time? Yes. We removes gluten from his
diet, personal care items ( shampoo, lotion) and play items ( play-doh,
stickers).
as/is it hard to follow/enforce? No and Yes. Once you get the hang of
it it's not that bad. But it is a pain in the neck. Personally it's
hard ot put so much effort into doing something when you're not getting
anything in return. If he had responded I think I would be a bit
more motivated
If you stopped the diet- why?- How long did you (your child) stay on the diet?
We plan to continue for 6 months and oserve closely when we re-introduce he foods.
[QUOTE=mom1221] I believe in my heart that every parent with an autistic spectrum child is negligent if they don't try this diet and follow it like your childs life depends on it. I have seen so many children make remarkable and dramatic changes on this diet that I can never put into words how important I feel it is!!!!!!! [/QUOTE]
Then lock me up woman. I didn't try the diet either. Unless you are loaded with money you can't afford to try the diet!!!!!!!!!!!!!!!! And furthermore, my kids neuro, who is very well respected here and has tons of experience, told me the diet doesn't work!!!!!! If this diet worked that well it would be mandatory and I mean MANDATORY that all parents try it after the child was diagnosed. As Michelle said, what works with one child won't work for the other. Now as far as starting a poll, if you looked at the bottom of any page that you are logged in to, it says you cannot start a poll. That is the way this message board is set up.
THanks you guys. I'm locked up with you too!
First, we could NEVER afford this diet. Second, with the extremely limited range of acceptable foods (in my son's eyes) he'd starve to death. I researched it carefully, and I didn't see enough DEFINATEness to bother with cutting out money that needs to go for other therapy, and putting into his diet.
Another thing to keep in mind, as the gals mentioned before is the key word.. Spectrum... No two kids are the same, and no single thing works for everyone all the time.
Thanks gabu, browneyes, mom1221 and srsmom for sharing your experiences. This is very interesting. I don't think mom1221 meant her statement as an attack on anyone. Others have pointed out some good reasons that it won't work for their family. In fact the first thing mom1221 said was you have to do it 100%-no exceptions- if the child is in a divorce situation and both parents aren't committed- I see how there would be no point in trying.
Anyone else have any input?
Both me and Michelle quoted her. She said if any parent didn't try it they were neglectful. There is nothing to debate in that statement. Unless of course she is gonna give alot of these parents that are on fixed incomes the money. These diets are not cheap. And as I said if the diet worked that well it would be mandatory that every parent try it and it isn't, the last time I checked. Its not like the child's life depends on it. Its not like if the child is having a asthma attack and you withhold the asthma med. Now that is a life and death situation. Because if the asthma attack is severe enough you could die from it if you didn't have the meds.Cheapmom,
I have taken milk out of Zachary's diet, BUT.... only because Zachary had a known allergy to milk protiens when he was a baby. There didn't seem to be much difference at all.... and I will NOT be changing Zach's diet what so ever untill He see's a metabolic specialist and has BLOOD work done to show that he has some sort of food allergies and with the guidance of DR's we will go from there, because As Michelle, the idea behind the diet isn't that ALLLL autistic kids have this going on, but that there seems to be a common thread with a good amount of kids on the spectrum having ALLERGIES to Casein and Gluten. Please keep that in mind. I personally don't feel that unless your child already has some digestive issues going on this diet isn't going to do much for them. Every parent whom I know in real life who has tried the diet did so because thier childeren already had digestive problems, NOT simply because they were on the Spectrum. Zach for instance has never had a normal bowel movement in his 3 years of life... and for the first year of his life struggled hard with throwing up and diarehia. These are things to take into consideration.
As for this statement bye Mom1221.....
"I believe in my heart that every parent with an autistic spectrum child is negligent if they don't try this diet and follow it like your childs life depends on it."
Excuse my language but.... Bullsh*t. Untill you in your almighty wisdom of Autism Spectrum Disorders PROOVES to me that diet can reverse my sons autism diagnosis please keep your opinions about whether or not I'm a good parent to yourself. I'm sorry if that is rude and I appologize to anyone who is reading this and is offended, but that hurts me deeply. I come to this board for support and caring from people, some of which I consider my friends.... and I do NOT need to hear, see or whatever from any parent on this board that they feel I am NEGLIGENT because I can't or won't do certain things that other parents will. Neither do any of the other moms here....
well put everyone. i came here for support and a lending ear and not to be judged for things
we are all here for support and to ask questions and get supportive answers.
so for all of you that have lent a ear. thanks!!!!!!!!!!!!!!!!!!!!!!!!!
Check Out http://www.greatplainslaboratory.com/gluten-casein.html OR http://www.greatplainslaboratory.com/foodallergy.html for more info."
From what I have read, and seen on the GFCF email lists, testing doesn't really tell you if the diet will be effective. I have always heard that the only way to really know is to try it.
Here is a quote from Jacquelyn McCandless's book, "Children with Starving Brains". (She is the DAN guru right now.)
"Quantitatively accurate measurement of these peptides (gluten and casein) is still not yet in the realm of routine clinical testing, and results in terms of clinical application have been very confusing over the years. Children with high values may show no gut symptoms or any benefit by removal of casein and gluten from their diets; many children with normal values may respond amazingly well to a GF/CF diet." (Children with Starving Brains, p. 80)
From the gfcfdiet.com site:
One method of testing for gluten and casein intolerance is determined by the urine peptide test. This test looks for abnormal peptides in the urine. Some parents implement the diet before lab testing and see proof that the diet works. Other parents may feel the need for testing to substantiate using the GFCF Diet as an intervention. The peptide test has been known to report "false negatives" for the need to eliminate gluten and casein. We feel that because of the successful improvements seen in so many ASD children after strict adherence to the diet, a test is not always necessary. However, keep in mind that lab testing may help some parents make the decision and stick with the GFCF Diet.
If so- please post your experiences here.
I don't know how to post a poll- but these are the questions I have
Did you see changes? Big changes...small changes..no change?
Were you very strict in implementing the diet removing 100% of glutens/casiens 100% of the time? Was/is it hard to follow/enforce?
If you stopped the diet- why?- How long did you (your child) stay on the diet?
Really looking for experiences from people who actually gave it a go- not opinions or things that people have heard (no offense) Thanks in advance.
Have you tried Gluten/Casien Free diet? yes
Did you see changes? No.
Were you very strict in implementing the diet removing 100% of glutens/casiens 100% of the time? Yes
Was/is it hard to follow/enforce? No, but my son has very limited diet preferences, so there were not many foods we had to substitute for.
How long did you (your child) stay on the diet? 6 months
If you stopped the diet- why? We stopped it for 2 reasons, first was that my son got to the point where he would only eat french fries and potato chips. I had been making waffles for him out of bean flour, and then deep frying them, and coating them with cinnamon sugar. This was the only sub I could find for french toast sticks. He stopped eating those, and he stopped eating the chicken nuggets I made for him (chicken pieces coated with potato chip crumbs, everyone loved them but my son!), he just would not eat anything. Because I felt he wasn't getting enough nutrition, especially protein, along with my second reason that we didn't see any change in him while he was on the diet, we took him off the diet.
We didn't see any change when we added gluten and casein back into his diet either. And 3 months after we stopped the diet, he had some blood work done, which included a Carnitine level. The doc was checking the Carnitine level to see if my son had mitochondrial disease. His Carnitine level was low, well below normal, but it has to be very low to signal mitochondrial disease. Anyway, we were told that his level was low because he wasn't getting enough protein. At that point he hadn't started eating regular chicken nuggets again. I started really pushing the protein after that, just offering it to him all the time, and he finally started eating McDonald's chicken nuggets and he will eat pizza with cheese on it. So I feel a little better about his protein intake now.
I know you said you didn't want opinions, but I thought I'd offer mine anyway.
I have not personally heard of any child, other than Karyn Seroussi's (the woman who wrote "Unraveling the Mystery of Autism", about her son's recovery from autism using the GFCF diet), who has been "cured" or "recovered" through diet changes alone.
Of the 4 neurologist's we have seen, the first one said he didn't discourage the GFCF diet, but he had never seen it make a difference for a child. This neurologist sees a large number of kids with autism.. The second neurologist is a DAN doctor, and felt that diet had helped a large portion of the kids he treated. The third neurologist said that diet helps about 25% of kids with autism. He also sees a large number of children with autism in his practice. The fourth neurologist doesn't specialize in autism, and doesn't see many in her practice.
Again my personal opinion here, is that the diet is worth trying, and the only way to know if it will work for your child is to try it.
I removed casein from Luke's diet for reasons similar to Sarah ... Luke seemed to have a dairy allergy. Also, it's not TOO difficult to remove dairy ... he now drinks rice milk (happily) and eats rice cheese. It made a difference in his allergic reactions (eczema is almost all gone and no more red cheeks) and his constipation problem is basically all taken care of, too. I'd been interested in attempting the gluten-free part of the diet, since I cook just about everything from scratch anyway, but decided that it was just too expensive and there was too little concrete evidence to support such drastic measures. For now anyway.
Good luck with your decision!
Kellie
If you cut out all dairy products and things made with dairy- will that remove caseins?
"If you cut out all dairy products and things made with dairy- will that remove caseins?"
For the most part, but casein is just a protein, and sometimes it is added to things you wouldn't expect. For instance, it is in most kinds of soy cheese, and can be in luncheon meats. You have to read labels carefully.
I recommend spending some time on www.gfcfdiet.com
You can also join the gfcf kids email group on yahoo, it is a very active group and generates lots of email, but you can always set it to daily digest or no email and just read the posts on the site. http://health.groups.yahoo.com/group/GFCFKids/
There is another group on Yahoo, gfcf recipes, that is also helpful. In their files section there are tons of recipes and tips. http://health.groups.yahoo.com/group/GFCFrecipes/
*smiles* Mom1221 .... as Tammy said wording is everything and since this is the internet feelings can often get scrambled and emotions confused.... I accept your appology and hope you accept mine and let move on to brighter days. *laughs* and just for the record .... i'm a stay at home mom, but i can't cook worth a crap *laughs*Tammy
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