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katifer

Told To Put Son Back On Gluten....

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okay so my son was only given a gene test---nothing else by our Dr. --he told me to take him off gluten beacuse he has the HQ2 gene--my son wasnt thriving etc.--never eating etc., .....now 6 months later he is still not eating much-more but seems to have many other things he cant eat-- My bro is a gastro surgen and told me he was shocked my 18month old was not given the proper testing and told me to drive to Atlanta for a ped, gastro specialist for a biopsy etc. Please tell me someone else has had to do this? i feel horrible for my son but i really think we need to know for sure. i think he has to go back on gluten for 4-6 weeks---thanks--

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yeah the problem with an 18 mth old is the blood tests are very unreliable, if you took your boy off gluten and he is not getting better after 6 mths or more, either you did not take him off all gluten or gluten is not the problem and he needs the extra calories consumed with gluten. i don;t know how strict you were and i do n ot know if he gained weight, but 40 % of america carries the gene so you are the parent.... you do what is best for your son..... people first. if you took him off gluten, and he is not better than gluten is not the problem.... in adults healing takes years in kids it usually takes months and in some cases weeks, so feed your child what you feel is best b/c we can only advise from what you say in your post...

best of luck!

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You say your son was slowly getting better. It is usually extremely important to also take a child off all dairy and soy in order to heal and really get better. If you haven't done that, that could be the problem.

I wouldn't give up on the gluten-free diet that easily. After six months off gluten, it could take years before you would get positive test results after starting gluten again (four to six weeks won't destroy the villi, and that is what is necessary to get positive tests)! Not to mention the fact that the testing is extremely unreliable in children under six anyway.

If your son is really gluten intolerant, feeding it to him again could result in stunted growth, malnourishment, GERD, diarrhea, constipation, failure to thrive and even death eventually.

Your brother is right, all the proper testing should have been done right at the start, before trying the gluten-free diet. But to put a toddler back on gluten for testing will not work. Others here have tried that, making their children really ill again, with negative test results. It is not worth it!

You could still get him tested with Enterolab, their tests are still reliable up to a year after going gluten-free. They can't officially diagnose celiac disease, but CAN diagnose gluten, dairy and soy intolerance.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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