I want to start my autistic son on the gluten and casein free diet. However, I don't have any information on it, other then how it has helped improve hundreds of autistic children. I went to my son's doctor today to ask for her advice/help on the diet and she didn't help me at all. She didn't know anything on the diet, nor did she offer to have my son tested for food allergies. I specifically asked if there was a gluten allergy test and she said no. She went on to say that most kids who have gluten allergies are scrawny and since my son is large that he must not have any. Then why do I keep reading how important it is to have your child 'tested' before you start the diet? I'm feeling discouraged because I don't want to start a diet that I know nothing about. Can anyone offer a little guidance here?
I personally have not tried the diet yet. I keep thinking of doing it but, well see.
There are a ton of posts on here on the GF/CF diet if you do a search.
Listen, you do not work for the doctor the doctor works for YOU. Somehow these doctors get this wrong. YOU pay him to work for you. Go in with facts in hand and say OK, these are the test I am getting. Do not leave room for NO to be the answer. You are your childs best advocate. There are test for Gluten, Casein and Yeast.
I am starting my son on the GF/CF diet - we've already removed dairy (which wasn't hard considering his only source of dairy is milk). I knew nothing about it either, but to be honest with you, if you have a computer with internet access, what else do you need? Just search GF/CF diet and you'll have all the info you could ever want or need concerning the diet and the protocol for it. That's how I'm doing it. And find a good DAN! doctor in your area.
As far as your kid's doctor goes, you can't discuss things like allergy/heavy metal testing for autism with them b/c they're just completely not interested. It happened to me and the other mom that replied to your post was right on when she said that you don't take orders from them - they're supposed to work for you, but they always seem to get that mixed up! In fact, just last week I brought my kid in and told them I wanted the scrip for lead, yeast, dairy and wheat. I don't care what the doctor thinks about it, I just want her to write out the scrip! And she did. I tried to have the tests run on my son over a year ago for lead, and she told me "that is complete quackery". Yeah, well, let me tell you something doc, unless you have a child with autism, you don't understand us mothers who will try anything and everything to help heal our babies...
Good luck in your search for answers...
I did the gf/cf diet for a year and a half with my son. What you need to do is like the last post said, find a DAN! dr.
DAN! stands for "defeat autism now!" They treat the kids from the inside out. Starting with the gut and the gf/cf diet. Just do search for it. Plenty will come up. You will be amazed at what contains gluten and casein...
Good luck with it all, and just know there is not a lot of those dr's out there, so you may have to travel to see one. And ,of course, they usually don't accept insurance so it may be out of pocket. Worth it worth it worth it. Don't ever let some pediatrician make you feel like you're lower than them. Just MOVE on and maybe you'll come across one that will work hand in hand w/ a DAN! dr so it all isn't so tramatic for the pocket book! That diet can be taxing!!!!!!
I don't know anyone with autism and don't really know very much on the topic, but I wanted to share some information I saw on CNN's Larry King. He had the actress Jenny McCarthy on the show sharing her story and she wrote a book called "Louder than Words." She recommends a lot of information about autism that she learned from personal experience. She has an autistic son and she says she found information that helped her son recover from autism. She says he no longer has autism after doing what she did and wants to spread the word to other mothers looking for answers. She said she put her son on a gluten free and dairy free diet and he soon started showing signs of improvement like speaking words and making eye contact. She also found he had a candida problem and put him on Diflucan to wipe out the systemic candida from his system. It seems like an amazing story and I just wanted to share the information for those of you looking for answers when it seems like the doctors are not providing this vital, necessary information.
The last poster has great suggestions but I wanted to clarify her typo so not to scare anyone away from trying it.
I have taken the same path she has by removing dairy to start then trying the removal of wheat.
She meant Soy and Rice made icecream. I chuckled when I read it because it said mice based and if I were new at this I would have been reluctant to try it if it had anything to do with mice.
I saw significant improvement in my son after the removal of dairy. I could really relate to Jenny McCarthy although we haven't tried the biomedical approach. It's just been all diet and therapy that started when he was 27 months and continues today and he's almost 5 and almost indistinguishable.
Most people don't even see it. It's usually only people that work with kids on the spectrum that pick up on his little quirky things. Today he's more quirky than he is PDD.
It's definately worth the try. Alot of people shy away because they feel their kids won't eat because all they like is dairy or cheerios for example but believe me when I say eventually they start taking the substitutions put in front of them because they are hungry. For us the rewards far out weighed the inconveniences.
Thank you all for your replies and by all means, please keep them coming
My son is 2 and I have only been coping with his diagnoses for a year. Most of the information I read on here is new to me. I actually went and made an appointment with a DAN doctor after reading your replies. I had never heard of them before. Aside from the up-coming appointment, I have my son in PT, ST, early intervention and am attempting this GF/CF diet. I also opted for him to wait on the MMR shot and spaced all his other vaccinations extremely far apart.
I actually eliminated milk out of my son's diet a couple months ago. I put him on soy and am even considering taking him off of that. I heard you see the best results on rice milk.
This diet is HARD I went to a health store to buy GF/CF foods and they just don't taste good at all. My son simply wouldn't eat them. Unfortunately his favorite foods (grilled cheese, pizza, popcorn shrimp) are extremely hard to make in GF/CF form. I did find GF chicken nuggets, except they are extremely pricey.
I was also interested in trying this diet with my son. I happened to be having a meeting with my son's therapists and dr's....so I brought up the subject. They said that diet changes can be very beneficial for a child with behavioural issues, like ADD etc. but that the casin free gulten free diet in a child with autism won't help nor cure autism. They said it would be like giving a child with down's syndrome the diet change and expect it to help or cure that disability. They said that a diet can NOT help autism, there is no cure for autism. They said that if I had started the diet at the same time as the intensive therapy, that I would've thought it was the diet doing wonders, but it would've been the therapy doing the wonders. They said I should put my focus and energy on strategies that have proven to work like early intervention and therapy. I don't know what to do because so many people have said this diet does wonders...and I know that the medical profession can be sceptical when it comes to "holistic" approaches. I'll continue to read for other people's experiences.
Last edited by momofanangel; 10-02-2007 at 08:33 AM.
The diet really works for lots and lots of children. We have had my son on a special diet since he was 2. He is now 7. We did speech and ABA, but did not have major break throughs until we combined the speech and ABA with full elimination of wheat, milk and soy. His language skills exploded and he was finally able to focus. He also stopped having tantrums.
Do not ever let someone tell you the diet will not work. You need to try it for yourself. If after 2 months on the strict diet if you do not notice changes in your child's speech and cognitive or behavior problems then go back to what your child was eating before. I wish I could say the diet didn't work!!!!! It is very expensive (my child also eats only organic) and I would love for him to eat whatever his friends are having. My son is a straight A student in a regular Second grade class. He has no behavior problems and is the most social kid ever. The diet can't harm anyone. Good Luck!
How are you ? I've tried the diet and can attest to the success of it with my son as well. Now I have suggested that my cousin start it with her two year old who is showing some language delays. She tried it putting him on soy milk and he broke out in a major rash. She discovered in the process that he is allergic to soy.
I didn't have that added ingredient to stay off of. She has him on Rice milk but I was wondering if you have any tips on other foods that are GF/CF/SOY
free. I would appreciate your input. You've always been a great resource.
Other than fruits and veggies, what else are all gcs free? Snack foods ??
Hi Jeffrey's mom! Things are great! The hardest year for me was age 2 until 3. Since the age of 3 every year has gotten better and better. Second grade is amazing. Progress reports came home on Monday and my child got all A's and under teacher comments she said my son was a pleasure to have in class. I feel very, very fortunate. I re read the book "Let me Hear yoiur Voice" by Catherine Maurice this week. I cried a lot. It is amazing the stuff you forget!!!!!!!!! It was painful to remember all the heartache and challenges my son went through.
As for your diet question, the only company I really trust to order food from is Enjoy Life Foods. You can order online or find them at stores like Earth Fare or Whole Foods. We also have a couple of health food stores that are not chains that carry Enjoy life foods. They are wheat, gluten, dairy, soy, corn and egg free. My son eats the bread, bagels, cereal, cookies and snack bars. They are expensive. But my childrens friends will eat the cookies and snack bars, so they taste good. The only other snack food he has is Cape Cod potato chips.
The rest of his diet is either grilled chicken, burgers, steak or organic hot dogs with no nitrates or additives just pure beef. He will eat every fruit out there and almost every vegetable. You are lucky your son can have soy. Once you get rid of soy, there are very few packaged snacks you can eat.
Thank you so much for the info. You are a great resource for this board. I remember your posts to me when we first started this path and you encouraged me by letting me know that the diet intervention does work when the doctors were non supportive. Thank you for that because if we hadn't changed his diet I can't even imagine what he would be like today.
My son is still in preschool, he'll be five in November and he is just amazing. I can relate to remembering the earlier years and crying for the struggles and the relief I feel now. He is as close to typical as you can get but it was 2 1/2 years of heavy duty ABA along with the diet that got him where he is.
I am so glad to hear about your son doing so well. It's so encouraging to know that all the work you put into him has paid off for all of you. I know you funded most of his therapy yourself and it must have been a hardship at times but you are being rewarded with all of those "A"s he's bringing home.
You must be so proud of him. I know I beam about my little guy and appreciate every accomplishment like it is his first.
Keep us posted on how things are, I love to hear success stories and I think it's great for the newbies because it provides the much needed hope at what seems like such a desperate time.
My daughter took her sensory son (4) to a homeopathic doc for another opinion and nutrition and natural supplements, etc.
he goes to OT regularly but is having trouble in pre-school with transitioning and staying on task. almost acts ADD.
these foods can be deadly for someone allergic or sensitive and mimic ADD, hyperactivity, autism, SID, not to mention, headaches, itchiness, nervousness, cramps, etc...
The homeo doc said allergy testing is the best way to know what they are allergic to. (not a skin test, but blood test) & it is very expensive...but will tell us what we need to know.
And gluten was one of the things on the list.
My daughter started with dairy which was easier than she imagined. We have now found that after no dairy for two weeks, he drank regular milk and that is a big no no. he had diahrrea and cramps 3 hours later. So that proved he had problem with milk! she has kept him off cheese, and on Soy, Rice and Almond milk. He has not said ONE WORD. he drinks it like a champ.
She has now eliminated wheat and gluten. we have a Whole Foods Market here and you can get whatever you need.
I agree, the breads available are not good tasting to kids. and a 4 year old will not eat wheat free rice bread or even Spelt.
He tries but says it tastes "yuk". so I don't know, perhaps bread will be a thing of the past for him.
Any doc that says you cannot test for an allergy to gluten is wrong. But there is a whole world of people out there to help. And yes, sometimes they are not on your insurance list. But keep looking for someone who is. A lot of docs who have kids with autism or learning problems are more knowledgeble and best to go to.
The last poster made a good point in that if you put your child on a dairy-free diet, don't expect them to just be able to drink a glass of regular milk again without noticeable effects. Every once in a blue moon I would break down and give him a dairy product and shortly after he would start acting bonkers...throwing himself on the floor, crying and holding his stomach...those types of things. Now if I'm at a friends or my parent's house and need to give him something to drink (and they don't have juice) I just take jello mix and add it in with water. Part of the dairy free diet requires you to get creative. I'm still working on the wheat thing...we have an apt with a DAN doctor on Monday to help walk me through it though