Trial end of diet

How long has your son been on the gfcf diet? The reason I am asking is if ithas been more than just a few weeks (I’m not sure exactly how long), even if hedoes have celiac disease the main tests will come out negative, as his body willno longer “recognize” the proteins in the way that makes the test come outpositive. Please let your doctor know how long it has been before the testingsince your son last had gluten, so he will know whether or not the results arereliable. I believe there is one test that can be done to check whether he hasthe gene for celiac even if he is still gluten-free. If he doesn’t have it,there’s no way (at least as I understand it) that he can have celiac disease. Ifhe has the gene, you don’t know if he does or doesn’t have it based on this testalone, but if you’ve already got him gluten-free with good results as far asother things, I don’t think I’d take him off the diet if I were you, at leastpermanently. Your doctor might want you to put him back on gluten for a few weeks before repeating the celiac tests you had done,but I’d really think hard before doing that if you’ve seen a lot of differencein him from going gluten and casein-free, depending on why you need theinformation regarding celiac disease. As someone else has posted to this oranother thread, the only difference it would make is if you’re considering goingoff the diet using enzymes, because the enzymes wouldn’t counteract the effectsof gluten on a celiac’s intestinal (and other) systems, much as they are likelyto help with behavioral effects of gluten. (Note, from what I understand, somekids can’t tolerate enzymes and of those who can, not all can successfully gooff the diet with them, even of those who aren’t celiac, but they are oftenhelped by them above what benefit the diet alone has.)

What changes did you see in your son from before you started him on the diet?Maybe if you post this someone who has experience with celiac disease cancomment on whether it’s likely.

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2 Comments so far »

  1. Elodia Kostis said,

    Wrote on March 14, 2007 @ 6:52 am

    The thing is that my son’sDAN! doctor knows how long he’s been on the diet and she stillordered the celiac blood test. The night after we took him and hadthat blood test done, I read the same thing you posted. That if theyhaven’t eaten gluten in quite a while, then the test could come backnegative but they still might have celiac disease. He has been onthe gf/cf diet for almost two months now. Even if he does get allbetter, I’m gonna keep him on the gf/cf diet…it’s healthieranyway. I might add more fruits and veggies but other than that, Ithink he’s eating better and healthier now than he has ever in hislife. All his food is organic except for vanilla pudding. I like itthat way myself. Makes me feel better as a mom, ya know?I have some questions for the doctor when we go to see her and someof them are about that very blood test. Email me. I will have to re-read your post again to soak it all in.

  2. Jacquline Pavlikowski said,

    Wrote on March 15, 2007 @ 1:03 pm

    We have never totally ended the diet, but we did reintroduce milk aswe never thought we saw any real benefit to being CF. When weintroduced the milk there seemed to be very little change in Thomas.However as time went on he became more stimmy, less focussed etc. Wewere on milk for about a year. Testing suggested that he may beintoleant. We took him off milk again for a trial period and neverlooked back. His behaviour improved, infact the deterioration on milkhad been so gradual that we never really attributed them to milk, butthey were. He is now also soya, corn, sugar and yeast free and thathas resulted in even bigger improvements.

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