GFCF diet success!!

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Hello everybody,

I am new here on wrongplanet. 4 weeks ago the Health Nurse told she thought my 3 yr old son could have autism. Poor co-ordination, trouble getting his attention, irrational tantrums, sensitivity to noise, playing alone & toe walking are just some of the symptoms he has. He is booked into the specialist on Oct the 5th.

After talking to a local nutritionist and getting her reassurance that it wouldn't hurt my son we started the GFCF diet 4 days ago. I should mention my son also has had trouble with constipation and eczema. When he was a baby I put Dermavene on him and he went red and puffed up (I now know that it is wheat based). So although it didn't click at the time I think he might be allergic to wheat as well as have trouble digesting the gluten and/or casein.

The second day after we started the diet he was quite alert and talkative, yesterday he was even better but I was sure I had to be imagining it, today he was a different child! I am completely stunned he played with his brother this morning, played with the dog who previously barely existed, was DANCING to the wiggles, he is answering my questions and his eyes are not glazing over, he even told me the dodo on tv was ugly when usually he just repeats things I say!! !

When I picked him up from childcare his room leader asked me if I had switched him for another child. She said he had been playing with the kids all day and when she asked him his name he answered! This is the closest thing I have come to a miracle in my life and I am still just trying to process it all.

I read that when the gluten/casein doesn't break down it leaches into the blood stream goes to the brain and acts as an opiate. After seeing the change in my son I believe every word it is like he has just woke up after being half asleep for the last 2 years he is even moving faster and more fluidly.

I know this diet doesn't work for everyone on the spectrum but if you havn't tried it for your child yet it might be worth it just in case you have the same success. Although we havn't seen it with our son apparently some children who go on the diet have withdrawal symptoms and their behaviour gets worse before it gets better just something to keep in mind. The nutritionist also said it could take a month to see results.

Good luck to everyone else who tries it

Congratulations - that is great news. Keep up the diet. I am sure it is challenging to stick to it, but you can do it!

I have no experience with this type of diet and ASD but I am a believer. I am NT and I see how food affects my own brain functioning and it is amazing what a different type of diet can do for me, so I imagine it could do a lot more for others.

That's great I had a lot of success with my son by changing his diet too. keep meaning to try this myself

it sounds like your son had physical symptoms indicating that he was likely to be a celiac. I am a celiac and yes, when I stopped consuming gluten, it was a major improvement for me all around. I still have social deficits, repetitive behaviors, etc but I feel better so it's easier to self-regulate. If you are a celiac or at risk (gluten intolerant), then yes you will have improvement in all sorts of physical and neurological symptoms. However, Autism and celiac disease are not one and the same. It's not something that will cause improvement for everyone on the Spectrum, so be careful of giving false hope. You also have not had your son tested for Autism yet, so it is possible that he had only celiac disease, which by itself causes behavioral issues, but never had Autism at all. That said, I am so happy that your son is doing much better:)

Your child never had autism, he was sick from having Celiac's Disease. I don't think this information will be of any real value to the people here. I have a sensitivity to gluten, but abstaining from it only makes me feel better-- it does not improve my autism.

I think you have experienced a miracle! I have never heard of a child with autism making a complete turn around after 2 days of being on the GFCF diet! I would still have him evaluated if he continues some of his behaviors.
Best of luck to you and your son!

I have heard of children with classic autism (not other types) having extreme improvement in several areas of functioning and learning through a diet change. Read Jenny McCarthy's books.

I agree it is possible to improve some autistic children's behavior with the GFCF (if they have a sensitivity to gluten) but, I find it hard to believe that this could happen in 2 days.......I think the child may have celiac disease.

Unfortunately Jenny McCarthy is a bit of a believer in faith healers. Her enthusiasm exceeds the scientific evidence, and her claims represent her hopes more than they represent her observations.

We need to keep separate what we know from what over-zealous parents allow themselves to believe:

1) ALL children on the spectrum make "miraculous" turns every so often. Autism is a condition filled with developmental stalls and bursts. It is rarely known exactly what caused the change, because not all variables can be controlled for. I have a child for whom no medication has ever been prescribed, and the only diet change we've ever made has been to cut out soy, and, yet, I can lay claim to what were practically overnight changes and improvements.

2) An autistic child with either celiac disease or gluten sensitivity will improve on either a GFCF or GF diet. The child can't tell the parents he gets sick from the food he eats, and he probably doesn't know it; the only clues are, of course, in behavior. When the illness goes, the behavior improves. Not rocket science. I am THRILLED that parents now know to look for and try these things, but blindly going GFCF is no simple, risk free answer: remember what the third most common allergen seems to be, and that is SOY, a substance that GFCF diets often use to replace the withdrawn foods. I have a husband and a son who are both sensitive to soy; if I had blindly gone on a GFCF with my son, it would have created road blocks.

3) Some children might present autistic because of other underlying conditions, but not actually be autistic. If the child is autistic and has diet sensitivities, behavior will improve but the autism will still be there. If the child's illness was only causing him to present autistic, then removing the illness will remove the confusion - the child is not autistic.

4) Some of the curebies got lucky finding a food sensitivity link and experimenting with diet changes. If food sensitivities exist in an autistic child, finding them and dealing with them does make a big difference. But, as of now, there is no evidence that food issues or celiac occur more often in autistic kids than in the general population. Approach this piece of the puzzle same as you would any other experiment with your child: cautiously, and consider all possible indicators.

5) Never pursue alternative treatments at the expense of following the core advice we KNOW to be true: find and honor the sensory issues, and don't force your child to stop stims (self-calming behaviors). Follow those, and you are likely to experience a few little miracles of your own. Or, if not miracles ... a better life with your child.

Hi matrixluver,

I only mentioned a few of my sons symptoms before I didn't mention that he is completely and utterly fascinated with anything mechanical, he pulls everything apart to see how it works, he was literally under his highchair at 2 checking out how it was put together, one of my friends asked him where the suspension on the motorbike was and he pointed to it and he also knows all the major pieces of a car, as a baby he was very stiff and would shake when excited (when he was being breastfed and fed mashed vegetables), he is fascinated/scared by noises like vacuum cleaners and chainsaws, he is HIGHLY excitable which I love, he has repetitive behaviours/rituals too. Also he is still toe walking and seems to still be having problems with anxiety. Does this sound like just celiac disease or could he be autistic as well? Is there any dangers in having celiac disease?

PS I never meant to give anyone false hope I never realised celiac disease gave you behavioural issues too having said that though I think that if a parent reads my post and their child is actually the same as my son it could change their life.

Thanks to those of you with messages of support And I apologise to those whose toes I have stepped on I never meant to enter into the debate about "curing" autism. I was just amazed and felt I had to let people know in case it helped even one person but I won't be posting it on anymore forums.

It sounds like you did it just right, spoke to a nutritionist and did an experiment. It sounds like your child had sensitivities to foods which have been elimminated. In addition it sounds like he is autistic. So it sounds like, removing the sensitivity helped some of his symptoms which had been attributed to autism, but maybe weren't actually caused by autism.

That's awesome.

I think it is fair to say that anyone who has constipation, eczema and behavioral issues should examine all potential causes, and diet would be one. I had DS's pediatritian run a full allergy and celiac screen on DS so we could rule out these issues. While I'm sure he would have freaked to find our house gluten free, I was hoping we would find an allergy that we could fix that easily. No such luck for us.

I don't think you need to go that far. You SHOULD talk about how things have played out for you, especially once you get down the road and have a better handle on what affected what, and what all your particular variables are. I think the important thing is to be aware of the controversy some proponents of the diet have invoked, because it is sometimes advocated in inappropriate situations, with parents left feeling like they somehow failed when it doesn't work. We're trying, here, to keep perspective on it as an option, not shut it down. So, tone down the excitement a bit (to avoid sounding like Jenny McCarthy ), share more of what you're learning as you read, and become a valuable part of the evolving discussion.

I will be interested in hearing what your final assessments tell you. It is quite possible for a child to be autistic and have celiac. Learning to treat the celiac in kids that have it has made a HUGE DIFFERENCE for many families. That is absolutely worth people knowing about.

In our case, stumbling on the soy issue seemed to help. And I do mean stumbling onto, for us ... totally by accident that I found a connection. But we're not the only family posting that has discovered that one, either. ALL options need to get laid on the table for parents to evaluate.

Food affects all body processes whether you have celiac disease or not. There are hundreds of diseases or disorders that the child could have that would be remedied by a move to this diet, not just celiac.

I am severely reactive hypoglycemic. Hypoglycemia symptoms are often mistaken for many other disorders such as ADHD. Changes in diet improve ADHD symptoms in children. That does not mean children who have ADHD and improve with a diet change are hypoglycemic. The logic is flawed.

They type of food you eat affects ALL brain processes. No one says a diet change can cure autism. No one has proven that children that improve on a GCGF diet all have celiac disease. The fact is that many children do improve with a diet change. No matter what their ailment - children will improve when they are on the diet their body needs and can process. Whether a disease is present or not, different people process food differently and there is no one diet that is ideal for everyone.

Food is a drug and causes chemical changes in our body and brain. It would not be a leap to say that it can affect / improve any type of brain illness (mental disorder).

This is exactly my experience. My daughter's tantrums and rages were greatly helped with the diet (not GF/CF but Failsafe) as well as her frustration tolerence was raised a bit I believe. It's been a while since we had an all night tantrum but that may also be due to her maturing and me getting better at heading them off . However, sensory issues, EF differences, obsessions, and anxiety are still present. I do believe in carefully monitoring food sensitivities in people with AS, especially if you have symptoms such as stomache aches, eczema, and digestive issues. Not only can gluten and casein be at fault but also food additives.

My daughter went through a sort of "withdrawal" at the beginning of the diet but now she will use self control when others are eating cake or candy. She KNOWS which foods make her feel bad. The other day she asked me "What's the point in trick or treating if you don't eat candy?"

thats the problem, there ARE some people saying that. there are people promoting the gfcf diet, chelation, prayer, etc and claiming its a cure. ok, granted, some of them call it "recovery", instead of the c word, but what they are promoting is the same thing. that if you do X, it will fix your child.

i think when we have anyone talking about cure, recovery, or miracles, we have a duty to our children to be skeptical, to question, to doubt, to further investigate. you dont want to completely blow something off without checking it out, but you also dont want to run out and heavily invest in it before you research whether its even safe or viable for your child.

we do need to hear about things like what the OP experienced, definitely. anecdotal evidence gives us things to look into. but i dont see an autism miracle in what she describes. it may have addressed or lessened some traits usually attributed to autism (altho "glazed eyes" is not something i would ever attribute to the autistics in my house, and my son has always danced, answered questions, and played with his brother and pets), but that doesnt mean they were caused by autism in the first place.

i feel bad because it feels like we are raining on the OPs parade =/ even tho im pretty sure thats absolutely not the intent of anyone in this thread. we are always happy to hear when a parent finds something that makes their childs life better. but we need to make sure those stories dont lead anyone to jump into potentially dangerous things. i'd like to think every parent looks at the scientific evidence in depth before trying therapies, but i know thats not the case. desperation leads some of us to do dangerous things. the miracle stories need to be accompanied by a good dose of reality.