Results 1 to 9 of 9

Thread: autism & GFCF diet question

  1. #1
    Join Date
    Jan 2006
    Posts
    169

    Default autism & GFCF diet question

    Good afternoon! Got another question for the wise wonderful women of this board...

    So my Miriam (age 2.5) now has this ASD diagnosis. I'm interested in exploring diet interventions if it seems that they could be helpful for Miriam. My initial hunch is that probiotics are worth some attention from us, since Miriam does have recurring diaper-area yeast infections. I keep hearing about the GFCF diet, but she doesn't seem to match up as far as I can see with the lists of things to look for in kids that might benefit from such a regimen. She's never had any obvious digestive or elimination problems, wasn't spitty as a baby, eats widely and well, has no overwhelming cravings that we're aware of. But I could be wrong. Heck, I was wrong about the autism...

    My question -- is there a school of thought that advocates pretty much automatically trying out a GFCF-related diet on any kid with autism, to see if it helps? I have a friend whose daughter is PDD-NOS who has seen some wonderful diet-related results in her daughter, and seems to be oriented toward an "ALL autism has a diet-related component" vibe.

    And, does anyone know of any research out there about what percentage of kids with autism respond to particular dietary interventions?

    Thanks in advance!

    -- Joanne
    & Miriam, 5/27/04

  2. #2
    trek is offline INCIIDer - A Community Creator
    Join Date
    Sep 2006
    Posts
    2,058

    Default

    I know some have ecperience. I do not but am watching the replies closeley.

  3. #3
    mickey2's Avatar
    mickey2 is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006
    Posts
    1,565

    Default i do and will reply later this week....major

    time constraints today and tomorrow. but a good website is www.gfcfdiet.com

  4. #4
    Amytoo Guest

    Default

    Hi Joanne,
    I don't think there are any complete studies showing definitive diet answer. We are currently participating in a gluten free trial at the UC Davis MIND Institute, so hopefully some day there will be.

    http://www.ucdmc.ucdavis.edu/mindinstitute/

    Study info: We hope to learn if certain behaviors common in children with autism change in response to removing gluten (wheat) from their diet. Participants are between the ages of 2-6 years with autism spectrum disorder.
    Protocol: All participants will be on a gluten-free diet for 2 months. Following this period, some children will take a supplement containing gluten; others will take a gluten-free supplement. After 2 months, subjects crossover and receive the other type of supplement. Subjects must maintain a gluten-free diet while taking the supplements. Blood, urine, and stool samples will be collected over 4 clinic visits.
    Currently Enrolling: Participants 2-6 years of age with autism, Asperger Syndrome, or PDD-NOS

    Me again...
    All of the evidence I have heard is anecdotal, but there is no way to know for sure if your child will benefit unless you try it. IMHO I am not sure if the study we are in is really long enough gf (and it should be cf, too). My son has been cf for 2 years, gf part of the time. A break in the middle somewhere showed us that our son has a problem with dairy, he gets mean after about 2 weeks of consuming dairy, and his stools soften, too. He has not had any of the "bite of cake = regress" but maybe he really has a problem with corn or rice or? Once we are done with the study we will try other things... maybe my son needs Specific Carbohydrate Diet instead.

    Mickey2 is a font of information and thankfully shares often. Good luck to you and Miriam.

  5. #5
    Join Date
    Jan 2006
    Posts
    169

    Default

    Thanks -- I'll look forward to your response, and will check out the site!

  6. #6
    Join Date
    Jan 2006
    Posts
    169

    Default

    It's good to hear that some research is underway, at least. Good luck with the rest of the trial and with whatever else you try next!

  7. #7
    mickey2's Avatar
    mickey2 is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006
    Posts
    1,565

    Default our experience

    due to mck's allergies, evident as an infant and hx of family allergies, along with severe reflux; we were already avoiding eggs, nuts, bananas, and dairy. and finding foods for an infant w/o that stuff was pure torture. so i had to make his stuff anyway....so i decided why not try gf too.

    he was 20mos old at the time we went completely gf. his did not tell his docs or therapists (he had been dx'd a few months earlier with infantile regressive autism). the regression happened very rapidly at 13mos, btw.

    it was a pure hell of withdrawls the first 2wks of gf. but after, his therapists began commenting on how much more compliant he was, granted he still wasnt talking or signing again yet. but he seemed to "be there" again...like a haze had lifted.

    we continued gfcf for 2more months religiously. then i gave him a piece of bread with gluten in it. no dairy or eggs though. he became a raging, violent screaming banshee within an hour. his therapy sessions for the next 3days were also a nightmare. meltdown does not even describe his level of intense rage and violence.

    so we did gf again religiously, then i enrolled him in a special needs preschool and forgot they might use playdoh. the 2nd day he was there, their OT had hand use playdoh just 30min before pick up time. when i tried to buckle him, he once again became a raging beast and i had many bruises and bite marks from that horrid day. it took 20min and myself and 2 very strong staff members to buckle my then 21month old in his seat.

    not knowing that he had playdoh that day, i cried the entire 45min drive home as he thrashed and screamed like a banshee in the back the entire time. with the super high pitched, ear peirching shriek only a few moms ever have to endure but those on this bb are mostly likely familiar with.

    i thought we would have to pull him from the center. i was devastated. then i began reading his "sheet" for the day. and it mentioned playdoh. i thought, nah he didnt eat it. later that night, he began to violently chew/naw on his finger tips to the point of bleeding!! the next morning, he has massive blowouts every hour.

    so my lil guy, it turned out is soo sensitive to gluten in his system that when on his fingers/under nails, devoured his hand to get the chemical "fix" or high it gives some kids. we have never let him have real playdoh since, as we tested our theory on playdoh 2more times with simailar results. the next morning, he has massive blowouts every hour.

    some are sensitive to gluten in sticker adhesive and even licking envelopes to seal them. we make him wear gloves when workign with stickers now and he is not to lick envelopes ever.

    his gi doc, now suspects he has celiac disease but we are not willing to feed him gluten for 3-6months to confirm that dx with a painful colonoscopy.

    at 4yrs old, his allergy tested finally revealed a wheat allergy (had been negative before) even though he was gluten for years. so now we are forced to remain gfcf, egg free, nut free, and banana free for life for him.

    i will say i have seen families fall apart over the diet. to make it truly work, your so/dh needs to be on board. it will do no good if they dont believe in it and sneak your child food or other stuff with g or c in it without telling you. bottom line, you have to decide what works best for your family. that said, i strongly encourage parents to give a gcf trial using the 10 wk link below before making final decision about being long term gfcf. ive left out a lot...but thats the gist of our early experience with it. oh we also kept detailed food/behavoir journals

    *****
    my teen son, with asd and adhd went on the diet at home (he was 12 at time with little choice). at school and his moms, he ate normally. we saw little change in him...until almost 5months later. he stopped taking his adhd meds and no one could tell!!!!!!! he said, his mind was clearer and his stomach didnt hurt as much. he has had bowel issues since ive known him from age 2. so he even admit it works and told many others about it.

    the books i rec'd to better understand the basis of the diet are:
    -unraveling the mystery of autism and pervasive delopment disorder

    -special diet for special kids vol 1 (has more info on way it helps)

    -vol 2 has mostly new recipes

    -gluten free cookbooks by bette hagman

    -allergy free cookbooks by carol fenster

    i also found keeping a shopping list in my palm pilot to be a godsend!!! i will post it if there is any interest...it takes me a while to copy paste it all from my palm.

    this website has a guide guide to going gfcf in 10weeks:
    http://www.tacanow.com/gfcf_diet_10_weeks.htm

    to search for recipes that are gluten free, google celiac recipes

    to search for dairy/caesin free, google
    vegan and kosher pareve recipes

    for shopping online i love
    www.allegygrocer.com



    hugs

  8. #8
    Join Date
    Jan 2006
    Posts
    169

    Default

    Thanks so much for sharing your experience & resource recommendations! The friend to whom I've been talking about the diet has a DD who has some things in common with McKevor in terms of the extreme reactions to any gluten or casein that creeps in (another similarity is they suspect they may be dealing with mito issues too - that's part of McK's diagnosis if I'm remembering right?)

    I'm even more interested, though, in your older DS' experience with the diet, since it doesn't sound like he was nearly such an "obvious" candidate for it. Miriam's not an "obvious" candidate on the face of it, which makes it harder to contemplate jumping in to such a lifestyle change. Yet if it might help... Well, we'll see where we end up. Meanwhile, it's great to have the information sources at the ready. Thanks again, so very much!

  9. #9
    mickey2's Avatar
    mickey2 is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006
    Posts
    1,565

    Default

    yes mck has a mito dx from dr shoffner in atl as well confirmed by biopsy.

    the book special diet for special kids is a great read on the adhd side too. the diet in itself forces you to eat more healthy foods that arent riddened with pesticides, steroids, perservatives and chemially altered sugars. therefore, from a neuro standpoint, the brain is not being chemically assaulted as much daily and can begin to focus on what it really needs to "repair" as some say. have you ever taken prednisone??? yet we think nothing in todays society of giving our kids meat laddened with steroids in the name of better meat production and efficiency. just something to ponder. even if you choose not to go gfc, just eating more organic stuff will make a difference imho.

    so in essence, you eat more organic stuff (meats especially) and that is always a good thing for anyone. hugs

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •