Considering gfcf diet
My son is 3-1/2 and not autistic, but we are considering the GFCFdiet. While a firm diagnosis has not been agreed upon, we considerhim to have a moderate version of: oral and verbal apraxia,hypotonia which has caused fine motor issues and gross motor issues(balance and coordination). We have had very good results withNordic Naturals ProEFA fish oil, which started us on the biomedicalresearch path. The thing that got me interested in the GFCF diet isall the talk about BMs. My son’s are… not quite normal. Notdiarrhea, but pretty soft in my opionion. Plus, he just has nosense of when he needs to go to the bathroom. I have heard thatsome kids on the diet potty train quickly after starting. And onemore thing — since birth, he’s had EXCESSIVE mucus during thewinter months. Basically, colds that last a long time and arereally, really messy. We have been treating them with homeopathy,with some success, but that doesn’t get to the root of the problem — it just reduces the outward symptoms. (And he has dry skin, evenwith the fish oil, but we all sorta have that…)
So, my questions are:
(1.) Has anyone out there tried this diet with a non-autisticchild, with good results?
(2.) Does it really help with potty training and BM issues?
(3.) Should I have testing done first? Is there anything else Ishould do before starting?
(4.) Does anyone else have this mucus problem? (All the docs we’veseen think I’m nuts to care about it. Ugh.)
(5.) How can I really tell if my son has gut issues?
That’s it for now.
This post tagged as: nordic naturals, fish oil, autistic
Melisa Schumpert said,
Wrote on December 5, 2006 @ 10:20 am
Consider that he might have deficiencies of amino acids, especiallycarnitine and creatine. Also, B12 can many times help.
Yeast overgrowth often causes “drunk walk” and other gross motorcoordination issues.
Start by removing milk/casein.
My three younger kids all needed the same diet, altho it was not gfcf,and my youngest was NT.
Many times, yes, altho not always.
The only test that should be done before removing foods is a celiactest before removing gluten, if you want that test.
Milk is a common cause of this problem, as well as other problems.
If he responds to food removals or enzymes, he probably does.
Santina Winkelbauer said,
Wrote on December 6, 2006 @ 7:33 am
Whether my daughter’s issues put her on the spectrum before (let alone after)we started her on the diet (casein first, then gluten quite a while later) hasbeen a matter of some debate, so I don’t know if I can answer your firstquestion. However, a lot of what you describe for your son is similar to issueswe have faced with our daughter, so I want to encourage you to try the diet, asI have strong suspicions it will help him greatly.
Specifically, our daughter had oral/verbal apraxia to the point we had to gofrom “mommy” and “daddy” to “momma” and “dada” with sign facilitation (and thiswas when she was 2+. You could watch her “think” her way through the transitionbetween the r and n in “Barney” (where do I put my tongue, where do I put myteeth, etc. was all but clearly readable in her face). She has had hypotonia herwhole life, much improved now, although I don’t know what was diet and what wasother interventions.
As far as potty issues, our daughter was severely constipated, moreso beforewe took her off milk but it only cleared up for a while before returning sincewe didn’t take her off wheat at the same time. Within a week of taking her offwheat, we were also able to take her off her prescription laxative. I’ve heardof good results with kids who have the other problem, like your son, but can’tspeak to it from our experience. By the way, this is where you have the answerto question #5: if his stools are not “normal,” it would seem to me that he hassome sort of gut issues, although I can’t say what from your description.
Our daughter’s milk sensitivity caused ear infections, 8+ between her firstand second birthdays, then none for just over a year because we took her offmost milk (didn’t know about whey in McNuggets) 2 weeks after her birthday. Notonly did it take a year to have another earache, but it was 4 days after she gotwaffles (not a milkshake or banana split) at school, that she blew an eardrumwithout a fever. If that doesn’t indicate non-infectious cause, I don’t knowwhat does. I had planned to do the reading, share it with the doctor, do thetesting, etc, before taking her off milk (and possibly wheat) after readingKaryn Seroussi’s article in Parents magazine (February 2000) but what made ustake her off milk before we’d done that was that she was all but if not actuallychoking on phlegm when we were giving her milk when she had a bad cold. I laterfound out only those who are allergic/intolerant of milk get phlegm from it, sothat should have told us if nothing else did. We gave her milk Friday night before bed, decided not to give her any for the weekendto get the phlegm cleared up but thought we were seeing other changes in her.Her home worker who came Mondays at 11 said she thought she saw changes also (ifshe hadn’t I’d told my husband I’d give her milk again at lunch as we wereconcerned about her calcium) so we kept her off milk till that Friday when shehad her school-based services. Her transitioning and attending were greatlyimproved relative to just 2 weeks before that (vacation in the middle). Hersound sensitivities, while still there to some degree, fell off markedly (2weeks before that at her own birthday party she was screaming by the 3rd word of”Happy Birthday”, which also happened at playgroup birthdays, so it wasn’t justthat it was her own). 3 weeks after we took her off milk, the same song with thesame relatives at her cousin’s birthday and you can hardly tell she’s in theroom if you look at the video. By the way, she’s had 6 earaches in the past 5 1/2 years since taking her off milk, 3 of which we knoware from infractions involving milk, so that’s a pretty good record after 8+ ina year before that.
Santina Winkelbauer said,
Wrote on December 6, 2006 @ 9:50 pm
Besides whatever has happened to your son’s intestines from the gut issues, itsounds like he might also have sensory issues: hypersensitive externally andhyposensitive internally. Doesn’t like to be cleaned: somewhat hypersensitive;doesn’t know he needs to go: hypersensitive. Our daughter feels pain if I touchher with cold hands (like after washing them) but prefers her water ice cold asfar as drinking (and is only starting since we took gluten as well as casein outof her diet not to want most foods also straight from the fridge).
Our daughter’s ear infections always came with a fever. I took her in for her2-year “well child check” and she was running 101. That’s what told us it wasdefinitely the milk that had caused her earache a year after we took her offmost milk and 7 months after she was completely milk free, as if no earaches inthe interim didn’t: her eardrum ruptured (that had never happened before, thankHeavens!) and she wasn’t running a fever, unlike the previous infectiousearaches. Much as we always knew when she had an infection, I have to wonderwhat percent of the first two years of her life she had fluid in her ears thatwe didn’t know about because of no fever. They wanted to put tubes in her earsbut when we went to see the ENT she was clear that day. As that was about thetime we took her off milk, there hasn’t been a need since then, although onedoctor did recommend it when she had a single ear ache a couple of years later.(We had other problems with that one, also.)
Eleni Farha said,
Wrote on December 7, 2006 @ 2:19 pm
Will the diet help with sensory issues? Our son has some related to motoractivities (vestibular and proprioceptive), which I assume are connected to hishypotonia.
We saw an ENT to see if he should have his adenoids out because of the mucus,but he doesn’t do surgery unless you’ve had tons of infections or you have sleepapnea. We’re supposed to go to the CHOP sleep clinic, but I’ve been putting itoff since I don’t think that’s the real problem.