Gluten free diet?

[Nate's Grandpa]

Parents with children in the autistic spectrum -
Have you tried the gluten free diet?
Did it work well enough to keep your child off medication?

Nate's doctor has told us to try this diet for 2 months to see it works for Nate. If it does not, he plans on putting nate on medication.

What are your experiences?

Thank you!

[mulderxcoltrane]

Hi -
We don't have any autistic children. But - my sister was diagnosed with gulten intolerance (also called celiac disease) about 5-6 years ago and has been able to enjoy food just as much as before the diagnosis. It is challenging at times - but becoming common enough of a diet/allergy that most restaurants know how to deal with it and adjust. Especially the TS locations at WDW - every single chef came out to speak with her to make her something she could eat (except she had a lot of trouble at Mexico).

I/m sorry I cannot speak for it's helpfulness with autism - but wanted to add my 2 cents abotu the diet in general.

[Mickey'sGirl]

What will Nate need medication for? Neither of my sons is on mediction related to their austism.

I have read a lot about "the diet", but have ruled it out for our family. The restrictions are just to centred on the foods my children like best (dairy and grains). We considered trying just a gluten free diet, but have not started one. Also, there is no scientific proof anywhere (and I asked my family doctor, and both of my sons' specialists, as well as reading up on it) that the diet is effective. If there was some really good hard evidence, then I would push it, but until then, I wont.

That said, I do control what the children eat. I make almost everything we eat -- very little comes in a package, and it is never prepared food. Sugary foods like soda and candy are restricted, and green vegetables and fish are emphasized.

[Jenemmy]

When our son was about 3 or 4, we had the gluten and casein free diet suggested to us. You have to understand....food is one of the great highlights of my son's life. It was like living with a grumpy baby bear. He constantly went from pantry to fridge in an attempt to find his favorite things and was constantly mad that they weren't available.

It didn't end up making much of a difference for my DS, but that doesn't mean it wouldn't have a positive impact for Nate. I would file this under one of those things that you have nothing to lose by trying. This is non evasive, not controversial -- why not see if it has any benefits for him? There are a lot of theories out there on things that seem like they might do more harm than good where autism is involved, but this just doesn't seem to carry those risks.

If a child on the spectrum has a sensitivity to a food group, I can see where it would really throw them for a loop!

I can't speak to it's relation to meds. My DS never had a need for meds until about 2 years ago. I put those off as long as I could, but the need seriously and unfortunately arose. With him, I don't think diet would have made much difference.

[starryeyes21]

Get a second opinion. How old is Nate? If he is young there is still no need for medication. Try behavior modification techniques first. Medication should always be a last resort.

Remember you are removing all gluten from a child's diet. This is more than just bread. Gluten is a basic ingredient in a lot of foods. Think about how many foods contain bread and wheat. Now imagine not feeding them to your child. Is he currently enrolled in a school program, or even home based? Consider this....you may be removing the foods he works for and finds reinforcing. Removing reinforcing items from an ABA based program can have disastrous results.

I know alot of us saw Jenny McCarthy praising the benefits of this diet. Is it a serious step and not something to be taken lightly. Remember, she stated that she had her son tested left, right, and sideways before she began. Although she kind of glossed over that part quickly. A celebrity's success story is not a reason to drastically change a child's diet to such a drastic degree. Unfortunately, I believe she has given this diet more publicity than it ever had before and everyone from parents to doctors are suddenly pushing it.

There is no scientific evidence that this diet does anything at all. The gluten free diet was developed for people with a serious digestion disorder, as mentioned above . It was not developed for children with autism or other developmental disorders. There is a school of thought that believes children with autism have a "leaky gut". Meaning they are intolerant to gluten and this intolerance leads to behavioral outbursts and delays. There is no scientific evidence that proves this theory. It is a guess, a shot in the dark, attempting to treat this disability.

Cutting out a huge part of a child's diet is serious. Please consider this carefully. It is a huge commitment and there is no guarantee that it will work. Also if there are no results within a month your child should be taken off the diet. I've seen children suffer on this diet for years with no marked improvement because their parents had no idea it was okay to take them off again.

Stick with what works. ABA is the only approved treatment for children with autism. Meaning that it is the only therapy with scientific research to back it up. The gluten free diet can not say the same. It is pseudo-science and your child deserves better.

[cvzdesign]

My wife and daughter both have a gluten intolerance.

Now that they have gone gluten free, when they do have gluten, we all know it because their brains start to function differently.
Their emotions get out of control and they can't be reasoned with.

They have determined that some people who are autistic, benefit from a gluten free diet.
It may be that some diagnoses of Autism are just severe food allergies that mess with the seretonin in the brain.
I have no scientific proof for you as in studies though.

If you try gluten free, you have to completely get rid of it from the diet for an extended period of time, or it doesn't do any good.
It's very hard to do.
Malt is the most frustrating thing I think because it is used as a sweetener in many things that would otherwise be safe - like Rice Krispies.

We went to WDW this past year, and their Chefs are amazing at what they will do for this allergy. The girls never ate so good as they did for that week.
We got to thank Chef Aaron for it personally, since he was a big help in getting the program going.

[laydeetink]

What do you have to lose by trying gluten free?
Even better than gluten free, there are SO many that have been helped by the SCD diet.
Go to www.pecanbread.com for more information. My daughter has been on the SCD diet for 4 months. It is definitely a big change in routine and cooking, but we are ALL eating so much healthier. People don't need dairy or grains in their diets to be eating a wholesome, well-balanced diet. Kids with digestive issues (and most on the spectrum have digestive issues) really need to be so careful what they eat - because it truly effects everything. There is a brain/gut connection. Go to the pecanbread website and read about it. There is a pecanbread yahoo group for support = they can answer all your questions.

[Von-Drake]

I believe that some autistic children benefit greatly from a gluten free diet. We did consider it with our son, but after looking into the diet and talking to several people (doctors, his ABA therapists, and autistic evaluators, etc...), most of the said the diet shows improvement with children who have moderate to severe autism. Since our son has mild, they are not sure we would see a signifigant difference using the diet.

[cvzdesign]

Since Autism is the buzzword this month there are some things you should think about.

It seems that Autism is the latest catch-all category for a broad range of disorders.
Unfortunately it's kind of like saying you have a stomachache.

Is it from eating too much? Is it nervous? Is it food poisoning? Is it an ulcer, or acid?

We have noticed that the symptoms that many Celiac people have when they eat gluten could be seen as what could be categorized into a mild autism diagnosis: depression, anger, uncontrollable emotions. Yelling, and throwing fits...

The gluten in the food seems to cause problems with the Seretonin interactions, and the brain doesn't work as 'normal' anymore.

It has gotten pretty easy to avoid gluten with the new food labeling lately also. They always have to tell you when wheat is an ingredient, and products made in the USA fall under even more strict guidelines and have to tell you when a product is a derivative of it too.

The hardest part is finding a bread replacement that tastes good and doesn't cost $8.00 for a tiny loaf.

[BrerGnat]

I have to completely agree with Starryeyes21's post above.

My son's supervisor at his therapy center is currently studying for a Master's and her thesis is on the GFCF diet "prescribed" for so many autistic kids. She told me she HATES that diet, and what it does to those kids whose parents insist on it. She has worked with autistic kids for years and she has not once seen improvement in a child due to this diet. She said, if anything, the diet makes things worse for the kids, because it further restricts them in life, making it harder to assimilate with "typical" peers.

I personally wish Jenny McCarthy would just stop talking. She and that whole TACA organization is a ridiculous attempt to wring as much money as possible out of parents desperate for a "cure" for their children. Those DAN doctors are unethical, in my opinion. There's a reason why no insurance companies will cover their "therapies" and prescribed lab work. They're all a bunch of quacks. (my personal opinion).

Autism cannot be cured. It is a developmental disability. You can "retrain the brain" through therapies, but you cannot get rid of the autism, as you cannot change the way the brain formed. It's like a stroke. You can not get rid of the damage, but you can "retrain the brain". This is the reason why early intervention is so crucial and successful, because children up to about age 6 have "plasticity of the brain", where their brain is still developing, so you can "teach" the skills that did not develop properly and in so doing, increase the success of the therapy.

As for the GFCF diet, until there is solid scientific proof that this diet helps control symptoms, I am staying far away from it. On top of being expensive and difficult to implement, it means that the WHOLE FAMILY has to switch. It is impossible to just have one member of the family on this diet, since you have to rid your whole house of foods containing gluten/casein if you want it to work. I really feel for people with Celiac disease, because it is hard to avoid gluten.

If you have reason to suspect that Nate has a gluten intolerance, simply have his stool tested. It is a simple lab test and you will know 100% whether he has a true intolerance or not. If he does not, removing gluten is not going to make a difference. It is just going to make him have to eat strange (and not always tasty) foods. He will always be even that much more "different" when he goes to school. He will be the kid who, on top of being autistic, will never be able to take part in class parties where there is pizza, cookies, crackers as snack, etc. It just makes it that much harder on them and that is just sad. I have heard mothers swapping stores about how they have to hold their kids down and force feed them the gluten free foods, because they hate them so much, but they are SO determined that this diet works, that they are willing to do that, with their kids crying through every meal. To me, that is nothing short of child abuse.

Be very careful about this, as well as medications. Although I empathize with your desire to help Nate, and "cure" him of this condition (my own son, who is almost 4 is autistic), I think special diets and medications need to be reserved for those individuals who have a PROVEN dietary intolerance or condition that REQUIRES medication.

The best thing we can do to help our autistic children is to help them live as "normal" a life as possible, by enabling them to have the social/self help skills necessary to thrive in "our world", while not feeling overwhelmed and isolated. Therapy is the way to do this, as is not making too many allowances for them (i.e. treat them like a "normal" child as much as possible, and don't give in all the time to what they want). By forcing the home life to be as typical as possible, it allows the kids to adjust to the outside world that much easier.

[cvzdesign]

You definitely should get them tested for Gluten intolerance, but a stool test is very expensive and insurance won't cover the specialized genetic testing labs that are able to test that way. Your normal doctor's office is not likely to be able to do this.

A doctor's office can order a series of blood tests to test for the antibodies that indicate issues. We have found that Rhumatologists are likely to give you the best information about it since it is an auto-immune disorder.

The Celiac diet is NOT a cure for Autism. It is a 'cure' for Celiac which I firmly believe is sometimes misdiagnosed as Autism, or happens alongside Autism.

The ones that benefit are the ones that actually have a Gluten intolerance problem.
That is most likely the case with Jenny McCarthy's child.

[BrerGnat]

The Celiac diet is NOT a cure for Autism. It is a 'cure' for Celiac which I firmly believe is sometimes misdiagnosed as Autism, or happens alongside Autism.

The ones that benefit are the ones that actually have a Gluten intolerance problem.
That is most likely the case with Jenny McCarthy's child.

I totally agree. I think Jenny McCarthy's claims that her son is "cured" is just a testament to the countless hours of therapy that child has received. Any "benefit" due to the diet, medication, and "anti fungal" regime is probably MORE attributable to the therapy. That's the problem with proving that these alternative medicine therapies work. When there is behavioral therapy happening at the same time, there is no way to pinpoint how "successful" any one intervention is. Her son is 5 now. The GOAL of early intervention therapy is to have kids in a typical classroom eventually. Many, many times, this is accomplished by Kindergarten. My child is well on his way to being assimilated into a typical classroom, due in no part to a special diet or medications, but 100% as a result of the therapy/special education preschool he has been receiving since he was 19 months old.

[cvzdesign]

This all being said...
If an autistic child HAS Celiac, then getting on the diet would make a HUGE difference in their responsiveness to any other therapies.

So you definitely should check into it, but don't expect that it will be a magic cure all for everyone.

[BrerGnat]

This all being said...
If an autistic child HAS Celiac, then getting on the diet would make a HUGE difference in their responsiveness to any other therapies..

Very true. If there is reason to suspect Celiac, request a test. If it's for a medical purpose (i.e. you or the doctor suspects Celiac), the test SHOULD be covered by your insurance.

[Nate's Grandpa]

Thank all of you for your responses.

We did try the gluten-free diet. Nate would not eat any of the food, and we are certainly not going to force him.

On his last trip to his neuroligist, he showed marked improvement. Medication will not be necessary. We were told to keep doing whatever we are doing.

He is currently receiving speech therapy at a local public school. He is talking more every day. After being on a waiting list for 6 months, he has been accepted at Capstone Academy, where he will receive speech, O/T, and behavior therapy every day.

[Von-Drake]

On his last trip to his neuroligist, he showed marked improvement. Medication will not be necessary. We were told to keep doing whatever we are doing.
He is currently receiving speech therapy at a local public school. He is talking more every day. After being on a waiting list for 6 months, he has been accepted at Capstone Academy, where he will receive speech, O/T, and behavior therapy every day.

That is great news!!! So happy to hear the progress.

[Mickey'sGirl]

On his last trip to his neuroligist, he showed marked improvement. Medication will not be necessary. We were told to keep doing whatever we are doing.

He is currently receiving speech therapy at a local public school. He is talking more every day. After being on a waiting list for 6 months, he has been accepted at Capstone Academy, where he will receive speech, O/T, and behavior therapy every day.

That's terrific news James! You must be so proud of him!

[Nate's Grandpa]

That is great news!!! So happy to hear the progress.

Yes, this is the best news we have received in a long time. I am sure you know how we feel.

That's terrific news James! You must be so proud of him!

You know we are! He has really come out of his "shell" in the last several months.

His newest toy is a small Mickey doll we purchased last week. Nate calls him "Mick".

This "special needs" community means more to me than you will ever know. Maybe we can have a "special needs" meet someday.