Gluten "sensitivity"?

[yams]

About one year ago, we had our son's stool tested for gluten and casein sensitivities. His results showed he was within normal range for casein, but results for the gluten sensitivity showed "Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well."

We painstakingly removed gluten from his diet for 11 months and have seen no change in his stool. Recently, we had my son tested for the celiac gene and he was found to not have any gene for this disease. Our doctor said it was okay to begin letting him have wheat again. Does anyone have any insight on explaining this apparent discrepancy? If gluten sensitivity is a genetic syndrome and our son does not have the gene for it, is it correct in saying that he has no gluten intollerance and can resume eating wheat when it is unavoidable?

[mushroom]

Hello, and welcome to the forum.

With all due respect to the testers and their testing, the body is the ultimate test. I assume that your son was having some symptoms that you thought to test him in the first place??? Are those symptoms unchanged?? If so, perhaps it is not the gluten or casein, or not just the gluten or casein he was reacting to. There are so many diverse ingredients that are so pervasive in our diets today that it can take a bit of figuring out what it is that we are reacting to. And the testing is notoriously unreliable, including the genetic testing because they are finding new genes all the time associated with celiac and gluten sensitivity, that it is impossible to say with certainty, "That is not the problem", although the doctors, with their reliance on their tests, do say this.

So tell us what his symptoms were that you decided to have him tested, and what changes (if any) you have observed. That might help us give you an answer. Also, was his testing done through a doctor-ordered test or through Enterolab?

[yams]

Thanks, Mushroom.

My son, age 7 at the time, was showing signs of ADD, shorter stature than peers with predicted growth to be under 6' when his dad is 6'3". Also, he has always had "adult size" stool and larger than average volume of stool for a child. He is often very gassy and can frequently have bouts of diarhea after dinner. He has never complained about stomach aches or intestinal discomfort. All of this has been driven by us as parents really to turn over every stone before going to an ADD medication, but also to make sure we are doing what is right for him to help him achieve optimal physical growth and brain development.

We had him tested through enterolab (no docors orders) last October 2009. After going gluten-free, we have seen no change in any of the symptoms. Recently we took him to a pedi gi doc who ran other stool and blood tests. These most recent tests have concluded he is healthy and has no celiac gene. We were told to take Benefiber to help bulk up his stool. We are awaiting an allergist appointment to have the battery of back pricks done to find out about other allergies. Needlesstosay, we are confused by what to think and what to do for him. We've been giving him regular foods this past week (without him knowing it contains gluten in case we do revert back to a gluten-free diet). We have seen no changes.

Thanks for any advice and education you can offer.

Yams

Hello, and welcome to the forum.

With all due respect to the testers and their testing, the body is the ultimate test. I assume that your son was having some symptoms that you thought to test him in the first place??? Are those symptoms unchanged?? If so, perhaps it is not the gluten or casein, or not just the gluten or casein he was reacting to. There are so many diverse ingredients that are so pervasive in our diets today that it can take a bit of figuring out what it is that we are reacting to. And the testing is notoriously unreliable, including the genetic testing because they are finding new genes all the time associated with celiac and gluten sensitivity, that it is impossible to say with certainty, "That is not the problem", although the doctors, with their reliance on their tests, do say this.

So tell us what his symptoms were that you decided to have him tested, and what changes (if any) you have observed. That might help us give you an answer. Also, was his testing done through a doctor-ordered test or through Enterolab?

[yams]

Mushroom or any other forum member.....I added more information a few days ago, but haven't gotten a reply. Could someone respond? Thanks, Yams.

[mushroom]

If his symptoms are totally unaltered by the gluten free diet, one would be compelled to believe that that was not his problem. Have you tried him dairy free and soy-free as well? These are frequent co-travellers with gluten. Otherwise, you will have to await the allergy testing.