Anyone tried a GFCF diet for helping with ASD or ADHD?

[Celia]

I thought we'd give this a go. We just got in some books about it, and eek, it looks nearly impossible to implement!!!!! I did some research on the effectiveness of it, and it seems iffy. I feel absolutely negligent not trying this, but just don't think I can do it.

 

But maybe it's really worth a try.

 

Anyone had notable success with it?

[Misty]

YES! My children improved more than I ever dreamed possible when we went gluten and casein free. Especially my two younger ones. The earlier you start, the better.

 

We have been GFCF for nearly two years now and I wouldn't dare give my kids gluten for anything now (dairy occassionaly sneaks in). My 8yr old regresses instantly if she eats gluten (and it has happened). She is so much more manageable now and is learning and thriving. I highly recommend giving it a try for at least 3 months.

[happygrrl]

It made a huge difference for my family. It does not have to be difficult- just eat meat and veg! IT is when you try to re-create things (pizza crusts, breads, etc.) that it takes more work. If you just go to meat and veg and then occasionally add the other stuff when you feel you have time it can be really simple.

 

We were off dairy for 6 weeks, then were able to add raw milk with no ill effect. Pasteurized milk still makes us sick, but the raw tastes so delicious we would never go back!

[Celia]

Okay, I'm going to keep reading that book, and give more thought on trying this.

[AmyinMD]

My youngest ds is on GFCF. We have not gotten any noticable gains from it other than he started sleeping better while on it.

 

That said I do think diet stuff works. My ds is so picky though so when we went GFCF he spent most of the day munching on GF cereal so I don't think it's a big surprise it didn't help much. What he needs is healthy food that is so hard to get him to eat. We have since ditched all cereal in an effort to get him eating better. My ds has a huge yeast issue so the bigger thing for him is very little sugar and grains. I'm trying to slowly put him on SCD diet right now. I've left in well cooked rice noodles and the occasional slice of GFCF toast right now but it does seem to be helping some. Whether it will be worth the huge inconvenience remains to be seen.

[rafiki]

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[Renee in NC]

I know that we have gluten/dairy issues in our house.

 

I am diary-free now due to allergies, but I know if I get dairy accidently I have the "brain fog" and tend to be more erratic/explosive. I believe that gluten is also an issues, but haven't tried gluten-free yet.

 

My 10yo reacts to both as well. He was gluten-free as a baby due to failure to thrive issues. When he was getting gluten accidently and not having the horrible digestive issues, we allowed him to eat it again. However, we know that his behavior was exacerbated by gluten before the medication. If he has dairy at night it makes him stay awake for hours.

 

I have been planning to try gluten and dairy free, but the expense is so much even if you don't buy all the substitutes. Eating fruits, veggies, and meat exclusively is very expensive! We're going to make it work somehow, though.

[Leonor]

Yes, it does work and it does make a difference.

 

With children that are really not severe or moderate in their diagnosis it is harder to notice a difference.

 

My son was recently diagnosed as Auditory Associate Deficit.

My ds 15 is not ADD or autistic or for that matter does not have food allergies. Therefore it would be harder to detect differences.

 

However, we did GFCF for several years when he was between 4-8years old or more then went off of it for years. Recently we started going to a chiropractor who detected sensitivity to both and recommended going back on it. There is a difference.

[LittleIzumi]

baby on arm, sorry. tried gf, can't do it right now (food allergies to most of the alternative foods). i limit gluten though. we are df now. it seems to be making a huge difference for dd (adhd symptoms). :)

[Dandelion]

My 8yo DS (who has Asperger Syndrome) has been off wheat/gluten, dairy/casein, soy, eggs, peanuts, almonds, all artificial colors/flavors/preservatives, MSG, and HFCS for almost a year now (there are several more obscure foods that showed up on his food sensitivity blood test that we avoid as well). He basically eats lots of fruit, veggies, meat, a special Vegan Oat bread (that we get from our local GFCF bakery), nuts/seeds, and various specialty snacks (from the health food store). He takes several supplements as well (vitamins, minerals, etc.) to counteract any dietary deficiencies.

 

We noticed some positive changes within a few days of removing these foods and a very pronounced positive difference within about 2 weeks (it generally takes 3 weeks for dairy to completely clear your system - and about 3 months for gluten).

 

The main changes for DS (that I attribute directly to the dietary changes) have been:

 

 

• Calmer, sweeter temperament.
  
• Reduction in temper tantrums/meltdowns. They still happen but very infrequently and they last less than 2 minutes now.
  
• Less aggression
  
• Much easier to redirect when things don't go his way
  
• No more bedwetting
  
• Elimination of his nasal allergies. His doctor had prescribed a nasal spray, which we briefly used and discontinued because of the negative effects on his behavior - the dietary changes completely cleared up the problem.
  
• Elimination of his sleep apnea. He was diagnosed with sleep apnea and the doctor recommended a tonsillectomy/adenoidectomy. We held off because we wanted to try some less invasive treatments first. Because the dietary changes cleared up his allergies/massive mucus problem (and most likely significantly reduced the inflammation in his body), he no longer has sleep apnea.
  

 

For us, it's definitely been worth it. It's difficult at first, as you figure out what your child can/can't have, where to find certain foods, substitutes for frequently used ingredients, etc. - but as with anything, it gets easier and eventually becomes a routine. For us, it's no big deal now.

 

As an alternative to an elimination diet, you can also try enzymes for awhile and see if that helps. For some kids, adding the enzymes needed to digest the foods they're reactive to has the same effect as removing those foods (and it's much easier on the parent!). Doesn't work for everyone though (we tried enzymes and didn't see the same positive effects). Houston Enzymes has a very high quality product and their FAQ section provides a great overview of enzymes and how they work: http://www.houston-enzymes.com/learn/faq.php

[Laurie]

We tried it for awhile.

 

Some people respond very well to the diet, and you won't know unless you try it.

 

We eliminated dairy products first since the casein clears the system more quickly. You might want to start by going dairy free and see if you notice any changes. (Before you eliminate any foods, if there are any chronic digestive problems you should see if the doctor wants to do any testing for things like lactose intolerance or celiac.)

[Dobela]

I have 2 friends that did this and success depends on the child. One had great success with one child, but not her second child. Another is a smililar story - helped one child but not the other. All you can do is try. If it works, wonderful. If not, then you can look at something else.

[Guest]

I have 2 friends that did this and success depends on the child. One had great success with one child, but not her second child. Another is a smililar story - helped one child but not the other. All you can do is try. If it works, wonderful. If not, then you can look at something else.

 

:iagree:

 

The book George and Sam by Charlotte Moore tells the story of her two severely autistic sons and, among other things, their very different responses to the same treatments. One son responded dramatically to GFCF; the other did not. Some kids seem to be affected by the digestion and immune system aspects of the syndrome more than others.

 

One thing I thought was useful about the book was that she talks about Sam's symptoms which she thinks in retrospect signaled problems with gluten and dairy -- the other son, George, did not have those symptoms although they are both quite classically autistic in other ways. It would be great if there were scientific studies at some point which began to tease out these kinds of symptoms, which are helped by GFCF and which are not.

[littleWMN]

I have two with ADHD.

 

#1 has inattentive ADHD. We have not tried her gluten free.

 

#2 is highly, highly ADHD. She has has a chromosome duplication which causes a cognitive disability. She was tested as gluten sensitive. She's been GF for almost a month and it made a world of difference in her impulsivity. She still has visible signs of ADHD of course but it's a lot more manageable (she's also on a stimulant). She is not casein or dairy free.

[craftyerin]

For us, it's definitely been worth it. It's difficult at first, as you figure out what your child can/can't have, where to find certain foods, substitutes for frequently used ingredients, etc. - but as with anything, it gets easier and eventually becomes a routine. For us, it's no big deal now.

 

This was true for us, as well. We went GFCF in November of last year for my then 3yo son who has ADHD symptoms. We noticed a huge and immediate change in his overall temperament, impulse control, and cooperativeness. The first few months were tough, but now it's just our "normal".

[bettyandbob]

ds is not dx asd, but has other issues. Behavior and attention are much better GF. My whole house is GF. We were CF for a while too, but that is not as much of an issue. It is my understanding that for some people once gluten and casien has been out of their system for 6 months to a year they may begin to tolerate casien again.

 

We eat a lot healthier than we would without these restrictions and that helps us all.

[Leeanne]

I used the GFCF diet for two years with my PDD-NOS son when he was about 5 years old. At that same time, we also sought vitamin therapy through the Pfieffer Treatment Center in Chicago. Our ds had significant gains in speech at that time. Looking back, I should have tried the diet in isolation to see which had the greater benefit. I would say that it is easier to implement the diet when the child is younger. My ds was pretty compliant with the food choices that I offered. Now he is a teenager and I'm not sure he would even talk to me if I made him eat rice flour bread.:glare:

[pdalley]

I thought we'd give this a go. We just got in some books about it, and eek, it looks nearly impossible to implement!!!!! I did some research on the effectiveness of it, and it seems iffy. I feel absolutely negligent not trying this, but just don't think I can do it.

 

But maybe it's really worth a try.

 

Anyone had notable success with it?

 

We tried it for a year back when it was a lot harder to find GFCF and had no appreciable difference. I have met kids that it did help. I really think it depends on the child. I'm glad we did try it though it nearly drove me nuts at the time.

[trailofsparks]

I found this article interesting. It would seem to me, though, that any age would benefit from probiotics and fermented foods.

 

http://articles.mercola.com/sites/articles/archive/2011/07/31/dr-natasha-campbell-mcbride-on-gaps-nutritional-program.aspx?e_cid=20110731_SNL_Art_1

[acat]

Our family has been gluten-free for 9 years due to issues early on and a family history. As a two year old, my daughter threw many tantrums when we introduced gluten. We removed it and the tantrums subsided. My gentle and kind husband actually becomes angry and mean when he has had gluten. He can't even tolerate a trace of it. We noticed improvement off of gluten almost immediately (including an immediate 4 pound weight gain in our three year old daughter). Our doctor was amazed since she did not have a positive blood test for the antibodies.

 

We are planning on also eliminating dairy as soon as possible for my youngest's Tourette's

[Misty]

Our doctor was amazed since she did not have a positive blood test for the antibodies.

 

This is very common for kids to test negative for celiac antibodies (IgA). This is because these kids don't usually have full blown celiac disease. They are non-celiac gluten intolerant in most cases.

 

We are planning on also eliminating dairy as soon as possible for my youngest's Tourette's

 

This is a good idea as my daughter's Tourette's disappeared after removing gluten and dairy. Every time I try to reintroduce dairy, her tics come back.

[Misty]

I used the GFCF diet for two years with my PDD-NOS son when he was about 5 years old. At that same time, we also sought vitamin therapy through the Pfieffer Treatment Center in Chicago. Our ds had significant gains in speech at that time. Looking back, I should have tried the diet in isolation to see which had the greater benefit.

 

Naahhh... You did right by doing both at the same time.. It doesn't matter which one worked the best as long as your son got better! That's all that really matters, right? :) And it's likely that he wouldn't have benefited from the vitamin therapy as much if he hadn't also been GFCF at the same time.. You just never know..

[Granny_Weatherwax]

It helps me with my depression and moodiness. DS, who has Tourette Syndrome, began SCD (Specific Carbohydrate Diet yesterday). My desire is to reduce his anxiety and tics.

[SkateLeft]

We tried it for almost a year, and it had no effect, sadly. We couldn't do it as a family for several reasons, but my little guy's diet is so limited anyway that it was easy to do it with him. He actually preferred some of the GFCF foods, and still eats them.

 

I know it works for lots of people, but it didn't work for us. My little guy has a cyst in his brain though that causes a lot of his issues, so perhaps that's why.

[SKAAs Mom]

I started DS 4.5 on GFCF in June. He has ADHD combined and has some traits that put him on the ASD spectrum. It has made a HUGE difference!

 

I HS my older DD and always dreamed of HSing my two little guys (also have a DS that's 2). DS has about driven me nuts, literally. In the spring we had him observed to start the IEP process, he got up 17 times in 30 minutes while a "behavior specialist" oberseved him in a preschool setting. Last week she observed him again for four days and the most he got up in the same time frame was 5. He doesn't qualify for an IEP on behavior. YEAH!!!!!! For the past month we've been "doing school" and he's been doing really good. This fall he is going to go to preschool for three afternoons a week and we'll continue doing school at home, hopefully next year for K he will be home full-time.

 

Basically we eat grilled meat, a vegetable, and fruit. He likes fruit snacks, GFCF pretzles, and GFCF ice cream for snack. He likes hot dogs, and chicken fingers breaded with corn flake crumbs for lunch. He also has fallen in love with baked potatoes with non-dairy "butter". We have noticed that our grocery bill is much higher now but we hardly go out to eat anymore and fast food lunches are completly gone, as are snacks from the bakery orgas station, so we are saving loads of money.

 

Sorry for the long reply, I could talk about this forever. Bottom line, it is so worth trying and you have nothing to lose, and a lot to gain if it works. :)

Edited August 3, 2011 by SKAAs Mom

[chiguirre]

We tried it and it didn't work for either ds. In fact, ds2 started to speak in sentences when we reintroduced dairy and gluten, so I could erase that option from the list with total confidence. OTOH, I'd give it a try so that you know if it works for your child or not. It sounds more daunting than it really is. Meat, veg, rice, potatoes (from scratch), corn flour tortillas and arepas, popcorn, fruit are all okay. The gfcf waffles are very good, I still buy them. The hardest part for us was eating all our meals at home.

 

ETA: Neither of my auties are prone to digestive issues and both have good immune systems. We rarely have a sick child visit. If this is your case, I'd bet that gfcf won't help, but I'd still try for a couple of months, just in case.

[AmyinMD]

We tried it and it didn't work for either ds. In fact, ds2 started to speak in sentences when we reintroduced dairy and gluten, so I could erase that option from the list with total confidence. OTOH, I'd give it a try so that you know if it works for your child or not. It sounds more daunting than it really is. Meat, veg, rice, potatoes (from scratch), corn flour tortillas and arepas, popcorn, fruit are all okay. The gfcf waffles are very good, I still buy them. The hardest part for us was eating all our meals at home.

 

ETA: Neither of my auties are prone to digestive issues and both have good immune systems. We rarely have a sick child visit. If this is your case, I'd bet that gfcf won't help, but I'd still try for a couple of months, just in case.

 

 

I've seen reports of kids making speech and other gains with reintroducing milk. One theory I've read is that milk is high is cysteine which is one of the precursors to glutathione that a lot of autistics are low in.

 

My son has gastrointestinal issues but GFCF hasn't seemed to help them. I'm getting ready to try SCD with him. I haven't found GFCF to be too hard unless we need to eat away from home. SCD looks like such a huge pain but I feel I need to try it a couple months. I like that SCD adds in dairy products like kefir and yogurt. At what age did your ds start talking in sentences? My 3.5 yo has been stuck on single words for the past 2 years. I've heard some kids never move past that but we do occasionally get a bit of combining but he always loses it. The Neuro is suspecting seizures which I really hope is not the case. We're doing an EEG next week.

[chiguirre]

At what age did your ds start talking in sentences? My 3.5 yo has been stuck on single words for the past 2 years. I've heard some kids never move past that but we do occasionally get a bit of combining but he always loses it. The Neuro is suspecting seizures which I really hope is not the case. We're doing an EEG next week.

 

At 3.5!:D

 

I hope you have a similar experience. And just for the record, he doesn't shut up now and most people don't really notice the few issues he still has with grammar.

 

Even ds1 who didn't form sentences until he was 5.5 or 6 can communicate verbally enough to handle daily life at home without many meltdowns because we don't know what he wants. Of course, he can't have everything he wants, so we do have meltdowns, but it's sooo much better than when he was mostly non-verbal.

[acat]

This is a good idea as my daughter's Tourette's disappeared after removing gluten and dairy. Every time I try to reintroduce dairy, her tics come back.

 

We have been off of dairy for 2 days now (no gluten for past decade). The Tourette's is actually much worse. I know it may take a few weeks to see improvement, but has anybody seen this happen? Despite the setback with the tics, her appetite is hugely increased the past two days (a good thing).

[acat]

I'm getting ready to try SCD with him. I haven't found GFCF to be too hard unless we need to eat away from home. SCD looks like such a huge pain but I feel I need to try it a couple months. I like that SCD adds in dairy products like kefir and yogurt.

 

My husband and I did SCD for one year after he became celiac (he had seizures as a child too). The diet alleviated nearly all of his GI symptoms and weight loss. As a bonus it improved my mood significantly. However, he could not deviate from the diet one bit or he would suffer. We never ate at restaurants. Unfortunately, I burned out cooking for him and we had to give it up. We even made our own yougurt! He would go back on it in an instant if we had a personal chef.

[Dandelion]

We have been off of dairy for 2 days now (no gluten for past decade). The Tourette's is actually much worse. I know it may take a few weeks to see improvement, but has anybody seen this happen?

 

Yes, some detox/withdrawal symptoms (that may aggravate the Tourette's in the short-term) are normal. Google "dairy detox symptoms" and you'll find all kinds of information people have shared about what it was like detoxing from dairy. From what I've read, it can take up to a week for those symptoms to go away (for my DS, it took about 3 days).

[JZMom]

We've been experimenting with DS1's diet for a while now. In October, we eliminated dairy and saw no change. At the beginning of this year, we tried eliminating gluten too- still, no change. Now we're trying the Feingold diet on top of the GFCF, and I think we're starting to see some progress. Stage 1 lasts 6 weeks, and after that, things loosen up a bit. At that point, I want to try adding back in dairy, then gluten, and see if I notice any difference. Doing all 3 together is pretty tough, but I'm trying to stick with one change at a time so I'll know for sure what's working, and what's not.

 

If I had it all to do over again, I'd start with the Feingold diet. It's much easier to implement, imo.