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Old 11-05-2009, 12:06 PM #1
Nehal kandil Nehal kandil is offline
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Default hhelp my son

Hi everybody
i am a mother for a son 10 years old and he is a cerebral pulse child due to lack of oxgyen during birth. He can not walk alone and cannot talk .i am living in usa now and my son is receiving all the needed therapies here . But the problem started 7 months ago when we were in Egypt our home country where my son goes to a special nurse for handicapped children and the owner of this nurse said that mohamed needs to make the gluten and casein test as his eye contact is so bad compared to his ability to understand the orders and do it .In the begining doctor says to me that the test will be urinary peptid test but later we find a problem in sending this sample to usa and decided to make another BLOOD TEST to show the gluten and casein antibodies .The test measured the IgA and the IgG

The test was horrible the results came so high so i started to put mohamed on guten and casein diet .

Then i came to usa to continue his phsyical therapy and i tried to repeat the test in order to know if the results changed or as it is .BUT the doctor told me that this kind of test is not known here in usa and she did an allgery test that shows that mohamed is normal .
i was afraid of stopping the diet as it will not be easy to go on it again so i asked the doctor to make a urinary peptid test and the test says it is normal as the normal scale is between 14 an 150 and my son's result was 33

NOW I DO NOT KNOW WHAT TO DO ?IS THAT ENOUGH AND I CAN LET MY SON EAT EVERYTHING OR NOT?

ALSO I READ ON THE NET SOME THING ABOUT AN " MRT " TEST AND I WANT SOMEONETO TELL ME WHAT TO DO ..I AM IN HEELLL
PLEASE IF SOMEBODY READ THIS TRY TO SEND ME WHAT WILL BE THE MOST ACCURATE EXAM TO BE SURE IF MOHAMED SHOULD REMAIN ON THIS GFCF DIET OR NOT ?
THANKS ....DEPREESED MOTHER
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Old 11-05-2009, 12:18 PM #2
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Welcome to NeuroTalk!

I'm so sorry for all the health problems your son is experiencing. I understand how upsetting this is, as I have two sons of my own.

There's a forum here for those with gluten sensitivity that has lots of information:

http://neurotalk.psychcentral.com/forum13.html

There are lots of folks here who know about these tests and also about the benefits of the diets.

My husband is on a gluten free diet though he was never tested for it. If the diet seems to be helping your son, I would just stay with it.

I wish you and your son the very best of luck living in the USA and I'm glad you found this great forum. Take care.
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Old 11-05-2009, 03:51 PM #3
jccgf jccgf is offline
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Hi~

Based on the past positive result of gluten and casein antibody tests, I would continue with the gf/cf diet.

Antibodies to gluten and casein will begin to decrease once gluten and casein are removed from the diet. It can take anywhere from a couple of weeks to a year for those antibodies to reach completely negative levels, but testing him now will not give you the same results as when you tested him while eating these things.

I wouldn't go backwards by putting your son back on wheat and cow's milk, just to run new tests. You could rerun the tests to be sure you are completely removing these items from his diet... the antibodies should be lower or negative.

Quote:

.BUT the doctor told me that this kind of test is not known here in usa and she did an allgery test that shows that mohamed is normal .
I'm guessing you may have seen an allergist or a doctor who was only thinking in terms of IgE allergy testing. Most of our doctors here either don't know about or don't really believe in gluten and casein sensitivities unless they are IgE allergies. But, there is more and more research being done on IgA and IgG reactions to foods.

Really ANY doctor should be able to order gliadin and beta-casein IgG and IgA antibody tests for you. The trouble is finding a doctor who understands why these are meaningful.

There are some doctors here in the US who will test for gluten and casein related peptides (as well as gliadin and beta-casein antibodies), but these are often a different type of doctor... what we call "alternative" or "integrative" medicine doctors. If you searched out a DAN! doctor, one would be able to make sense of this for you... and understand completely what you are talking about. DAN! stands for defeat autism now, but they treat children with or without autism spectrum disorders. They are probably the smartest doctors when it comes to understanding gluten and casein problems. The "peptide" problem is different than the "antibody" problem... and people can have one or the other, or both. A gluten free/ casein free diet is used to treat either problem.
DAN! doctors
http://www.autismwebsite.com/practitioners/us_lc.htm
Integrative Medicine Doctors
http://jccglutenfree.googlepages.com...edicinedoctors


Here are some labs who do urinary peptide testing:
http://www.greatplainslaboratory.com...ng/peptide.asp
http://www.genovadiagnostics.com/ind...139&print=true

But... again... if your son has been on a gluten free /casein free diet for a period of months... the tests will likely be "negative" or normal.

I have seen one study that suggests that children with CP might be at greater risk for gluten sensitivity. As long as your son has tested positive in the past, best thing, in my opinion, is to just stick with the diet.
http://www.ncbi.nlm.nih.gov/pubmed/1...t=AbstractPlus


Quote:
NOW I DO NOT KNOW WHAT TO DO ?IS THAT ENOUGH AND I CAN LET MY SON EAT EVERYTHING OR NOT?
I think you should keep your son on a gf/cf diet. I've heard of MRT, but don't know enough about it to comment. Your son's peptide test was probably within normal limits because he isn't eating gluten or casein, or maybe he doesn't have the peptide part of the problem. If you had positive gluten and casein antibody tests in the past, that is all you really need to know. A gluten free/ casein free diet is for him.

Have you noticed any improvements in his health or behaviour since removing the foods? How long has he been gluten and casein free?

I hope this makes some sense to you, and I hope you can find a doctor who can help you.

Cara
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Last edited by jccgf; 11-05-2009 at 04:11 PM.
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Old 11-07-2009, 12:18 PM #4
jccgf jccgf is offline
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I found this explanation of MRT testing by Dr. Scott Lewey who has a great deal of excellent articles about gluten sensitivity:
http://ezinearticles.com/?MRT-Testin...gies&id=757842

Other articles about food sensitivity:
http://ezinearticles.com/?expert=Dr._Scot_Lewey
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