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Question re: gluten withdrawal and celiac testing


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Has anyone tested negative for celiac and/or gluten sensitivity but still tried a gluten-free diet and experienced significant withdrawal symptoms?

 

I'm reading "The Kid-Friendly ADHD and Autism Cookbook" and it recommends getting celiac testing before eliminating gluten from the diet because there has to be gluten in the body when the test is done. DS's doctor wants to see him before she sends him for tests so she can be sure to get the right ones ordered. His appointment isn't until Aug. 8. I've read that gluten withdrawal can often cause worse behavior for a week or two before the body adjusts. I have no idea if he's got any sensitivities or if he'll have any withdrawal symptoms, and I'm just wondering what to expect. I figure by the time we see his regular dr., get the referral for tests, and then get the test results, it'll be the end of August, or later if we have to see a GI specialist first. My concern is that if any of his tests are positive, he's going to be going through withdrawal during his first week or two of middle school, which will be even worse since he's starting middle school so it'll be a whole new environment. Not an ideal first impression, know what I mean? I'm almost tempted to try him on a gluten-free diet now to see what happens, and so we'd know what to expect, and then introduce it back a couple days before the test, but it seems like that would just be too hard on him. Any thoughts?

 

Thanks.

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Has anyone tested negative for celiac and/or gluten sensitivity but still tried a gluten-free diet and experienced significant withdrawal symptoms?

 

I'm reading "The Kid-Friendly ADHD and Autism Cookbook" and it recommends getting celiac testing before eliminating gluten from the diet because there has to be gluten in the body when the test is done. DS's doctor wants to see him before she sends him for tests so she can be sure to get the right ones ordered. His appointment isn't until Aug. 8. I've read that gluten withdrawal can often cause worse behavior for a week or two before the body adjusts. I have no idea if he's got any sensitivities or if he'll have any withdrawal symptoms, and I'm just wondering what to expect. I figure by the time we see his regular dr., get the referral for tests, and then get the test results, it'll be the end of August, or later if we have to see a GI specialist first. My concern is that if any of his tests are positive, he's going to be going through withdrawal during his first week or two of middle school, which will be even worse since he's starting middle school so it'll be a whole new environment. Not an ideal first impression, know what I mean? I'm almost tempted to try him on a gluten-free diet now to see what happens, and so we'd know what to expect, and then introduce it back a couple days before the test, but it seems like that would just be too hard on him. Any thoughts?

 

Thanks.

 

 

Hi,

 

My son tested negative to the blood test at age 3. At almost age 7 after years of problems and no answers[in desperation], I took him off gluten and his lifelong major gi issues have resolved. He is a PANDAS kid, so not sure tics were affected, but hopefully the immune system is better.

 

Yes, he had withdrawal! He was grouchy and couldn't stand for anyone to be around him for about five days. Then he was fine. This happened with later accidental exposures. I truly believe he is celiac, because he has all of the symptoms. I took him off gluten before he could be scoped, but keep in mind the tests are not always accurate. Removing gluten has given my child a new lease on life: no more constant accidents in pants, he finally started growing and gaining weight, and the random throwing up has stopped. his motor skills are better...it has totally improved his life.

 

Being gf is not easy and your child has to be committed to it at that age. But my son is so careful, never wants his old symptoms to come back.

 

HTH

 

rgcamom

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