Trying Gluten-free and Casein(dairy)-free diet for 4yo son
 

I posted on the Gluten-free folder and thought I'd also share this here....

My 4yo son Anthony has neurological tics- both motor and vocal- that are about to be dx as Tourette Syndrome. He goes back to neurologist on Sept 10th, it will be a year of tics in Sept. He has other issues as well, that the neurologist says are neurological too (such as sensory integregration dysfunction, hypotonia, apraxia/ oral motor/fine motor/visual motor issues etc.)

I've read in a few different places that gluten-free diets have helped other kids with tics from TS. Someone recommended the book to me, "Tics and Tourette's: Breakthrough Discoveries in Natural Treatments" by Sheila J. Rogers. I'm ordering that book, and in the meantime, am already switching his diet to GF/CF in case it helps him. I wonder though, is it most commonly gluten only, or both? I wouldn't want to cut out the dairy too if I didn't have to, know what I mean?

I've been researching ingredients online- there are a lot of sites out there, and also calling the 800 #s on the backs of bottles of products to ask if they are GF. Some of it is very confusing. I've shopped at the GF section at a couple supermarkets and health food store, gathering up a good amount of things. Thankfully, I live very close to 2 really good health food stores that carry a good amount of items. Unfortunately though, they are both closed for vacation this week (strange coincidence!) so I had to go to a different one that isn't as good, in search of bread because the grocery stores didn't carry it. I've found some items I want to order online as well.

I gave him chocolate soy milk and he didn't like it, so I gave him Rice Dream vanilla with some chocolate syrup in it and he loved it! That was a big victory because he is a BIG milk drinker. Getting him to drink Rice Dream, with or without choc, is huge! I also just tried a different soy milk (Silk very vanilla fortified for kids) with choc syrup and he liked that too. The other one, that he didn't like, was a pre-made choc soymilk, so I'll just buy the vanilla one and add choc syrup.

I'm hoping he will get better, while realizing that he may not.

Has anyone else tried GF/CF? If so, how did it go for you?

Dawn

Hi ives,
I didn't go that route here sorry, but just wanted to say that I'm pleased to see a message from you. I'd been wondering how all that testing for seizures had gone. It's good to see that you now have a diagnosis (almost) because now you can look forward.

I'm sure others will stop by and respond regarding GF diet etc.. I have two children and neither used GF diet, although if I'd known my son was on autism spectrum when he was a child I probably would have gone down that direction to see if a trial helped with some of his digestive issues. However, I sometimes think that it's more likely that just a lactose free diet may have helped him. All our supermarkets here now have a section of gluten free products. Even though I don't follow gluten free diet, I sometimes buy those products. Probably much less expensive there than at our health food stores too. I guess it depends on the area. It varies so much.

Edited to add:
I forgot to mention that my son was always such a picky eater anyway, that if I'd put him on a gluten free diet way back when he was a little child he'd probably have not eaten anything too much. lol

Also wanted to add that tics typically wax and wane, so it's more than likely that you will notice that your son's tics are more active for some months or weeks and then there will be months or weeks when they're less active. Tics also will change. Some people will keep some core tics, but notice that other tics will come for a while and go away. Therefore I think it's always a helpful idea to keep a diary if you're going to try any type of treatments - natural or otherwise. I hope that makes sense what I wrote. Not quite awake here in Australia yet. ;)

There are some very experienced people from Neurotalk who post on the Celiac and Gluten sensitivity forum here who should be able to advise on certain products.

Well, good to finally hear back from you. I hope all is going well.

p.s. I was curious about the green ribbon in your avatar and wondered what it says. Thanks. :) Scrap this last question. I figured it out. :)

HI Lara! :)

It's this: http://img.photobucket.com/albums/v1...alribbonup.jpg

Hi Dawn,

Yes, I have been dairy and gluten free among many other foods. I struggle to maintain the diet. For right now I've just tried to remain dairy free. I work in a day-care so I sometimes eat what the kids eat just because of my wants/cravings. However, when I'm home I always maintain that dairy free diet. Avoiding allergy foods helps me a lot. Everyone's food allergies/sensitivities are different so without testing, trial and error should help you figure out what bothers your son. I hope that the gluten/dairy free diet helps your son.

If your son seems to want the soy milk all the time, I'd start to be concerned about whether soy bothers your son. So watch out for that. We tend to crave what we're allergic/sensitive to. I know that soy is an allergy/sensitivity for me from allergy testing. I don't drink dairy milk that much anymore so I really don't notice the difference between soy & dairy milk. I crave soy milk & ice cream just as much as I crave dairy milk & ice cream. So just keep an eye out for that.

Carolyn

Hi Carolyn, it's not that he craves rice milk or soy milk (he is drinking both), he was a big milk drinker so I'm just glad he likes/accepts substitutes :)

Hi Dawn

wondering how things are going?

Cheri

Actually, things are going really well so far! :)

In the first week, we've already noticed he is ticcing MUCH less! It could be coincidence though, but we'll keep going and hope.

how encouraging Dawn :)

keep looking to that light at the end of the tunnel .........

There is so much to learn from each other's experiences, isnt there, and who knows how many others have been helped just reading your posts here as you seek and begin to find and share the answers that help your child.


all the best and keep us posted whenever you get a chance.

Cheri

Hi- my son showed great improvement when off dairy. then as he got older and noticed his own responses he cut out most sugar. I therefore wonder if the dairy issue is more the sugar)lactose ) than it is the protein. or maybe both.

My son is on a gf/cf diet.

Rice Dream is NOT gluten free! It contains gluten from barley protein. It should be listed on the box.

It's the only rice milk I know of that isn't gluten free :(

Tattoomom, Rice Dream used to have the message about the barley. Now it doesn't and it is labelled "Gluten Free" instead. I called the makers of Rice Dream to get it figured out and they said it is considered gluten free, something about the new technology they have now to be able to test it differently. I'm really not sure of the specifics, you can call them to ask more about it. How long has your son been gfcf? Does it seem to help his tics?

As an update on my son....... his tics picked back up a few days before he started school. I figure it's just things changing/stress or whatever. He's now been in school since 8/30 and I'm not seeing many tics at home, some blinking but not a lot and no vocal. I wrote a letter asking his teacher what she sees at school though, and she says he has the blinking and vocal "a lot, almost constant". Yikes. Wish it was the other way around- better at school, worse at home- but oh well.

I brought him to his neurologist on Monday and she asked about his tics... I told her he has blinking, the vocal "hm" and a lip licking which made his lip red/chapped for a while there but has since gotten a bit better. Anyway, she said that's not a tic, but rather it's sensory...?????? huh? Anyone agree with that, or does it seem like a motor tic?

We have had our nine year old son on a gf/cf diet for three months now. We were very hopeful at first. But it's very difficult to follow and you can drive yourself crazy trying to figure out what he reacts to and what he does not. I can say I have not seen any real positive changes. Now my son is almost paranoid about what he eats. I don't know if that's a good thing or a bad thing. I feel he has enough going on right now, he shouldn't have to worry about everything little thing he eats.

Hi
I also posted this on the other thread but usually only people who have allergies/intolerances and sensitivities to foods benefit from eliminating them

did you eliminate wheat and gluten foods becasue your child tested allergic to these or just to see what would happen?

the only food restriction that we have is artificial chemical additives as my son doesnt have other food allergies

holistic doctor
 

We went to a holistic doctor who put Jacob on all kinds of suppliments which most of them I thought made sense. We have not had Jacob tested for any type of food allergies but the Dr. insisted on a W/G free diet very little carbs and no dairy! Whats left?? We followed it for a while but my son is quite thin he only weighs 60lbs. So we put him back on dairy. The Dr. reasoning something about yeast candida in the intestines causing some reaction with the brain? But so far I don't think there's any relation. But it was worth a try. Right now our biggest problem seems to be my son's behavior at school. He is becoming a big distraction he talks all the time while the teacher is trying to give a lesson. He makes jokes and acts silly. He was never like this before. I don't know how much of this behavior he can control . We switched meds from keppra to tennex. The Dr. said that should also help with his behavior. I don't know.

Hi Lori

have you had candida testing? Candida really can trigger all kinds of things.

here is a non scientific diy test for it
http://www.1stcandidacure.com/candidatest.html

it isnt conclusive but does give an indication if candida may be present

there is an excellent book called The Yeast Syndrome that has info on it and also receipes for a candida cleansing diet

we have found Candida Clear by NOW to be an excellent supplement to eradicate it