Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 > My undiagnosed 3 yo son has been cf/gf, corn free for 1 1/2 yrs. He > could tolerate soy and potatoes in the beginning, but this spring > began reacting to these. His doctors want to rechallenge him with > wheat to test for celiac. My children have been gfcf for 20 months. They also do not tolerate soy or potatoes, but they do tolerate these things with enzymes. There are several other foods they do not tolerate, even with enzymes. > > I am concerned because my son has mild seziures when exposed. Yes this can be a sign of celiac. But I would question your doctor about what knowing the official dx would do for your son, besides just the basic knowledge that he is in fact celiac. I would be VERY hesitant to create seizures just to have a dx. > > My questions are for anyone who has lived through a gluten > rechallenge: I challenged my children to test enzymes. I did NOT do this challenge for purposes of an official celiac test, so please do not consider my experience as indicative of what you should do. Just for informational purposes. > > 1. How long did you rechallenge before testing, and was it long > enough? I have heard [but do not know for sure] you have to give gluten every day for two months, without enzymes or other things to help. I gave gluten with enzymes, for three weeks only. > 2. How much wheat did you rechallenge with? Sorry, this I don't know if you want the official celiac test. You can call your doctor or lab tho. I used one slice of wheat based bread every morning with breakfast. > 3. What did you use to rechallenge (bread, cereal, pasta)? I used bread, one slice per day. > 4. What types of symptoms did you see and when? It took my son about two weeks to start showing small symptoms, but I did use the enzymes like I mentioned before, which you cannot do for a celiac test. My son began to have looser and looser bm, return of stims, loss of language and connectedness. I have another son who began to develop his skin rash at approximately the same time as my autistic son began showing his signs. > 5. How long after stopping the rechallenge did symptoms go away? It took my kids 3-4 weeks for the behaviors and rashes and other things to fully go away. > 6. Where there any long term effects that you believe were caused by > the rechallenge? My kids have severe reactions to problem foods now, whereas before I could allow small infractions with no problems. I think over time these reactions will be small again. But their intestines are definitely re-damaged. > > Any other input would be appreciated. If you prefer, please respond > privately to mplocki1@h... Because of the nature of the regressions in my children, plus in looking at photos of DH skin rash and other things, I believe my children are celiac, without the formal test. I am also 100% sure that I would NEVER want to give gluten for 2 months without enzymes, just to get a piece of paper that tells me what I know already, that my kids cannot have gluten. There are a few other benefits to having the actual piece of paper, but my kids were gfcf for 20 months before I did this challenge, and it is not worth it to me to challenge now, just for the dx and the few other benefits. You are of course, free to disagree and want that piece of paper, for your own information or for whatever other reason you want it. But this is my experience, for your consideration. > > Thanks, > > Merry Plocki, > 3 yo w/ diagnosed sensory integration disorder and undiagnosed PDD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 > > My kids have severe reactions to problem foods now, (giving gluten), whereas before (not giving gluten) > I could allow small infractions with no problems. _______________________________________________ (Parenthesis added above to highlight my confusion!!!!!) This surprises me....I had thought from all this reading I've been doing lately ()) on gfcf issues that over time (ON the diet) you have to be MORE careful with infractions, almost as if the body gets less and less able to tolerate the foods once you've eliminated them. Anyone???? It sounds like you're describing the opposite result with regard to infractions. I'm merely trying to understand all this! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Well I just read your reply here, plus reply and reply, and I have NO IDEA what ANY of you are talking about LOL So I will be more descriptive in what I meant, and hopefully you all can figure out what I mean, and maybe explain yourselves better to me. My kids were gfcf plus lots of other food removals for 20 months. I began enzymes about two months ago. I gave infractions as I described in my original message, one piece of wheat bread each morning. After two weeks I began to see signs. After another week I removed the gluten and casein again, but kept the enzymes. It took 3-4 weeks for things to be back to normal. Before I gave enzymes and infractions, when my kids were gfcf for 20 months with NO enzymes, I would allow an infraction sometimes, and I would see a mild reaction, but nothing too major, and not lasting too long. But now, after all this experience, if I allow my kids an infraction, it is a major reaction, and lasts a longer time. So I think if it was just an intolerance, that the small amount after 20 months would cause a large reaction, not a small one, because the body was " clean " . But if it is celiac, then the small amount after the villi had healed, would have caused a small reaction, because the villi would be healed and not destroyed like before. But now with the villi still " healing " from the experiment, the small amount does cause a larger reaction, because they are not yet fully healed. Plus my other son's rash sure looks like DH, and took 3-4 weeks to go away, but when he eats a food other than gluten that he still reacts to even with enzymes, the rash he gets looks different, and is gone within 3-4 DAYS and not weeks. So that is why I believe my kids are celiac. But even if they are not, I don't really care to find out for sure, because I really do not see the benefit of knowing " for sure " , when all it really means to me is something I already know, that they cannot eat gluten. Anyway that is my explanation. If Beth or or wants to re-phrase their replies so I can understand, that is okay, and if not, that is okay too. > > > > > My kids have severe reactions to problem foods now, (giving gluten), > whereas before (not giving gluten) > > I could allow small infractions with no problems. > > _______________________________________________ > > (Parenthesis added above to highlight my confusion!!!!!) > > This surprises me....I had thought from all this reading I've been doing > lately ()) on gfcf issues that over time (ON the diet) you have to be > MORE careful with infractions, almost as if the body gets less and less > able to tolerate the foods once you've eliminated them. Anyone???? > > It sounds like you're describing the opposite result with regard to > infractions. I'm merely trying to understand all this! Quote Link to comment Share on other sites More sharing options...
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