GFCF Diet..is there testing for this?

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

Clueless

GFCF Diet..is there testing for this?

Postby Clueless » Wed Dec 28, 2005 4:46 pm

I'm new to all this. Is there some sort of blood/allergy test to determine if your child is allergic to glutein and casein before embarking on the diet? My son is older so I anticipate that it will be much harder to remove the bad foods he eats since he is verbal and will ask for them. I'd hate to do the diet if he isn't allergic. Who wants to deal with aggression and him getting upset if it's not necessary... He never had bowel issues or rashes or anything so I suspect the diet may not be the thing for him. What do you think?

Grace
Posts: 3910
Joined: Wed Nov 23, 2005 8:54 am

Postby Grace » Wed Dec 28, 2005 5:37 pm

there is a urine test to see if your child would respond to being on the diet...I don't have details, though, but I am sure someone here does...
I did want to say that I considered not using the diet as Jaden didn't have bowel issues like diareah or constipation, etc. Not a lot of gas, etc. But I tried the diet anyway, figuring it couldn't hurt her. It has been 4 months, and when she gets food she shouldn't have, she is a BEAR, which shows that she needed it after all....Later tests showed that she doesn't digest or use alot of nutrients. So I am grateful we put her on the diet when we did.
HTH some,
~Blessed to be called Mama by many~

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Wed Dec 28, 2005 5:45 pm

It's called the Peptide test. You should not be GFCF before taking this test. You can order a kit at www.greatplainslaboratory.com

-Crystal

Clueless

Postby Clueless » Wed Dec 28, 2005 6:03 pm

THANKS!

Clueless

Postby Clueless » Wed Dec 28, 2005 6:08 pm

OK- I looked at the website.
Did anyone use this test before from Great Plains? What happens? You send the sample in and they tell you if the child is allergic? What is the turnaround time on something like this? Also, does your doctor have to get involved or do you do it yourself directly? Thanks all.

Guest

Postby Guest » Wed Dec 28, 2005 7:25 pm

I've read that kids that are allergic to milk, etc. CRAVE it? How is that possible? If it hurts them why are they 'addicted' to it? Wouldn't they refuse it?

Clueless

Maryann R

Diet

Postby Maryann R » Wed Dec 28, 2005 7:32 pm

Hi there,
From what I understand there are a lot of docs now saying that even tests are not very reliable when trying to make the decision to go GF/CF or not and the best way to tell is to simply give the diet a try. I did not really think my son was showing any improvement on the diet whatsoever but he recently had a diet infraction and had a horrible, scary regression - so I'm now a believer. He had blood testing years ago for foods and came up with nothing (though we used conventional labs) but his behavior when given these foods tells a different story. I do believe there must be some kids out there who truly DON'T need the diet also .. but it seems most DAN docs really stress the importance of it as a starting point in biomedical treatments. HTH
Maryann

Maryann R

Diet

Postby Maryann R » Wed Dec 28, 2005 7:38 pm

Sorry I forgot the milk issue that you asked about. As far as kids being allergic or sensative to something and craving it ... I don't know if it hurts them when they ingest it .. but from my understanding they can't break down the proteins in it and it can travel through the body and act as an drug so every time they eat/drink it they get "high" .. which is why when you take it away there is often a withdrawal type reaction. There are great yahoo groups and websites on line to learn more on the diet.
Maryann

Clueless

Postby Clueless » Wed Dec 28, 2005 7:45 pm

Thanks Maryann. One more question....what did you do first? Did you do the diet and then the b12 shots? Was it at the same time? What order did you do it...I have read on the boards that you said your child had good results.

Heather
Posts: 562
Joined: Fri Aug 19, 2005 5:41 pm

Postby Heather » Wed Dec 28, 2005 9:37 pm

We sent my son's urine sample and his gluten and casein levels were normal, the DAN doctor said it is up to me... still not sure what I am going to do.
The test is 100 dollars, we got ours done through Great Plains Lab.
Heather

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Wed Dec 28, 2005 10:01 pm

Our DAN! does say that the test is not very reliable b/c he has had patients who's test came back normal and then they end up doing a trial of the diet and the child makes significant improvement.

We didn't do the test..... to us it wasn't a big deal b/c since insurance does not recognize it as a liable test and wouldn't pay for it I figured it would jsut be easier to start the diet and see what happened. Within the first week my son had eye contact and stopped lining up things.

-Crystal
www.sashasrecovery.com

vnm4flan
Posts: 211
Joined: Thu Dec 01, 2005 3:09 pm

Postby vnm4flan » Thu Dec 29, 2005 2:53 am

Hello,

Nelson had the test done. The doctor said that if the levels were over 3 then we should remove the milk and/or gluten. Nelson's result for gluten were 4 but for casein they were over 7. Which does make sense because he seems to react to milk infractions a lot worse than to the wheat infractions.

We did try the diet but it was very hard for me to keep it up so we switched to using the HNI enzymes instead. Nelson eats everything just as long as he takes his peptizyde pills.

I should say that he improved a lot from the pills and has reached a point where I think he could stop taking the pills but I am afraid to try.

Cheers,
Vanessa
mom to Isabel (gifted) & Nelson (PDDNOS - HFA)

dawnrinchicago

Postby dawnrinchicago » Thu Dec 29, 2005 2:44 pm

I had an email correspondence with someone who wrote a book related to this area. Because I didn't ask the person if I could post this, I'm not going to note their name. Here's some interesting info (all that follows is from the author):

---------

Basically, the validity of the peptide test isn't very
good in telling you what you want to know on the practical
side.

At first years ago parents were told to spend money on
this test to see how those alledged peptides were doing
and how many might be getting at the brain. But the whole
opiate theory still remains just a theory...it still
hasn't been proven to be true. Other things in your body
(blood breakdown, yeast by-products) can generate peptides
that register on the test. If you get a high peptide
reading, it might be because you have a yeast overgrowth
and no problem with casein and gluten at all.

Parents constantly report over the years that they would
get a high peptide reading so scurry right on the GFCF
diet 100% strict for over a year or more. Then they would
run the test again after a year and get an even higher
peptide reading than before. Other parents would say their
tests results came back normal but they took out casein
and gluten foods and their child did very well when
supposedly he shouldn't have improved per the test
results. The take home message is that whatever the test
says, it isn't anything you can translate into a
meaningful course of action or base a decision on.

I wrote one of the lead fellows who studied the peptide
issue and came up with these tests, some time ago and
asked him what is the percentage of typical people with
healthy guts getting 'high' or elevated peptide readings
from this test. He said about 25%. That is 1 in 4 typical
people.

-------

I wouldn't do any course of action just based on those
test results. Go by how your daughter is responding. If you are
doing some food eliminations and she does better, then use
that as your baseline. If food eliminations do not produce
any noticeable improvements by about 6 weeks, maybe 8,
then put your energy elsewhere.

--------


A lot of people just use Peptizyde instead of worrying
about any potential amounts [a tiny bit of gluten or casein] here or there. A lot of people
use Peptizyde instead of doing a GFCF diet at all.

One of the very interesting results of so many people
using Peptizyde instead of gfcf diet is that once they put
the casein and gluten foods back into the diet, their
child does amazing better than on the diet. so for a
chunck of kids, the GFCF diet is not the best for their
health and there is something in the foods they are
missing.

-------

I would go with the Peptizyde plus Zyme Prime (not the
HN-zyme prime unless you know the fruity enzymes are
tolerated). These will help with gut healing whether you
do food eliminations or not.

Guest

Postby Guest » Thu Dec 29, 2005 3:33 pm

Dawn, thanks. Interesting stuff. Thanks to everyone on the posts.
Now I am more confused than ever! :o
My poor son...he loves goldfish crackers. I wish they had something like that GF/CF :( He will miss them. He asks for them all the time. He's older too so that makes it harder.

Clueless

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Thu Dec 29, 2005 3:41 pm

I do think that enzymes are great, even essential. BUt I don't think they can replace a GFCF diet unless the gut has time to heal from whatever caused the intolerance in the first place. We actually use the AFP Peptizyde and Zyme Prime for my son. But it is not a substitute for the diet, just a way to avoid the horrible reactions in case of infractions. I am sure there are some kids who don't have the massive damage that kids like my son do have. ANd maybe those would be the kids who could tolerate enzymes only. I don't know. I do know that we have been unable to go off the GFCF diet without regressions, even with enzymes.

Clueless,
I made my own version of the Goldfish crackers from an online recipe turned GFCF. I haven't made them in a while but my son loved them. I am hoping this is the right recipe! I tried many of them before I found one that worked.

Title: Cheddar-cornmeal Crackers

2 c Shredded cheddar cheese (I used Tofutti brand American slices and cut them up.)
6 tb Unsalted GFCF margarine (I used Fleishmann's)
3/4 c All-purpose GF flour
1 tsp xanthum gum
1/2 c Cornmeal
1/2 ts Ground cumin
1/4 ts Cayenne pepper
1/4 ts Salt

Adjust oven rack to middle position. Preheat oven to 350 degrees

In a food processor fitted with the metal blade, blend together the cheese and butter.

Add the flour, xanthum gum, cornmeal, cumin, cayenne and salt; process until the dough forms a ball.

Divide the dough in half and roll each into 1-1/2 inch diameter cylinder.

Wrap in plastic wrap and refrigerate until completely chilled, several hours or overnight.

Cut the dough into rounds 1/8 inch thick and place on baking sheets. (I cut them into little fishies using a soda lid with a section cut out for the fishy head. And then I just made the tail with a knife.)

Bake in a preheated 350 degree oven 10 minutes, or until lightly browned around the edges. Immediately remove the crackers from the baking sheets and cool on wire racks.

Store in airtight containers.
Tami

Guest

Postby Guest » Thu Dec 29, 2005 4:20 pm

TAMI W - THANK YOU FOR THAT RECIPE!
You are so nice to share.
It's very much appreciated.
Clueless (but getting better!)

dawnrinchicago

Postby dawnrinchicago » Thu Dec 29, 2005 5:15 pm

While we use AFP Peptizide, we are still GF/CF/SF. I agree, Tami.

Dawn

Guest

Postby Guest » Thu Dec 29, 2005 5:33 pm

Where do you get the AFP Peptizide? Is that something from Kirkman? You give it when they eat something they shouldn't?

Also, are any improvements seen if you gradually work your way into the diet? Like removing a few things at a time or is it all or nothing? Thanks.

dawnrinchicago

Postby dawnrinchicago » Thu Dec 29, 2005 8:30 pm

AFP peptizyde through Houston Nutriceuticals

1 chewable taken every time the kid eats anything (meals, snacks)

The diet tends to be all or nothing. Some people try to get every molecule (lotions, creams, no PlayDoh, etc.), I shoot for 95% compliance. I'm strict at home, but at a restaurant I will give her green beans even if I don't know what they've been cooked in. Google "gluten free casein free diet." There's a website called GFCF kids or something that has a phase-in plan.

Dawn


Return to “Diet and Biomedical Treatments for Autism”