Have you tried stopping the GFDF diet? jadengrace started it the beginning of August and we were wondering how much it is helping her. We were thinking of stopping it for a few days to see if there is any reaction...have any of you done this? what happened? (trying to see if I would be a fool to stop it we did not do it intentionally but .....my ds grabbed a bag of muffins off the counter (that I accidentally left out) and had stuffed 1 in his mouth before I caught him. We didn't see a huge difference in behavior but his facial rash and arm rash reappeared within 2 hours and he had loose bm (yuck). The rash corrected after being back on the diet for a couple of weeks and the loose bms disappeared in about 3 days...It wasn't the end of the world for us but it is obvious that his body does react to the gluten. I believe that the casein is a bigger culprit for us (in fact, we will be testing him for celiac just to see what his reaction is to gluten and casein). Good Luck. I had my son on the diet for a few months. We too weren't sure if the improvements he had made were related to diet or just improvements from therapy. We did reimplement both gluten and casien. About 2 wks before we reimplemented everything his behavior changed. He went back to obsessing over numbers (watching microwave/clocks) pushing buttons on clocks. It's been about 3 wks since he has been back on everything and things are coming and going. He seems to have developed some new things-sticking out his tongue a lot, but improved with others(not so scared of public toilets anymore) so I don't know what to say.   Luke isn't GF yet, but he is CF.  Abouth a month ago we let him have pizza.  For the next 3 days, he was quiet, withdrawn, and moody.  He also got the red circles under his eyes and red cheeks again.  We'll never let that happen again.  (But Luke has a confirmed dairy allergy -- so take that for what it's worth.) [QUOTE=BonBon] diet? jadengrace started it the beginning of August and we were wondering how much it is helping her. We were thinking of stopping it for a few days to see if there is any reaction...have any of you done this? what happened? (trying to see if I would be a fool to stop it [/QUOTE] Less than 3 months is not really long enough to know if the GFCF diet is having any benefit. While casein is quickly eliminated from the body (often within a few days, but can take as long as 3 weeks), gluten takes 6-9 months on average to completely exit the body's tissues. For a much older child (older than 8-10 years), it can take much longer, up to 2 years in some cases (really depends on the child and what other underlying issues there may be). What this means is that even though your child may be completely gluten free, she can still be reacting to gluten stored in her own tissues. Give her, at the very minimum, 6 months completely GFCF (w/no infractions) before doing a challenge. After 6 months, pick a day and let her eat all she wants and then watch what happens. If after 6 months of being completely GFCF (including non-food as well as food items) she has no reaction of any kind (foul bm's, rash, behavior changes, etc.), then you can probably safely say she doesn't need to be on the diet (after all, it doesn't work for every kid, unfortunately). A few points to keep in mind......Children who have food reactions can easily develop issues with new foods, so be careful to rotate her foods while you are doing the diet. Try not to replace the gluten containing foods with the same basic food all the time. For example, don't use cookies, breads, cakes, pancakes, waffles, etc. that are all based on the same grain, such as rice or potato flour. Vary the foods as much as possible by using rice-based cookies/breads one day, then potato flour-based cookies/breads the next, bean flour-based cookies/breads the next, and then start the cycle over again. By rotating foods on a 3-day cycle like this, you give the body a chance to clear out the foods completely so that a sensitivity or allergy would be less likely to develop. This philosophy should be applied to everything she eats or drinks: fruits, veggies, grains, meats, and sweets. Also, most children who are responders to the GFCF diet are also sensitive to soy and soy-based products. Therefore, soy should be avoided during this initial period of 6-9 months until her status with the diet has been established. After you have done your challenge at the end of 6-9 months, then you can introduce soy and see what happens. Bear in mind, though, that because soy protein is so similar to the gluten and casein proteins that it may take a few weeks to months before enough has built up in her system before you notice a reaction. Your best bet is to rotate soy in the diet so as to avoid any kind of reaction. Some children are also sensitive to corn because its protein is also similar to that of the gluten and casein. Corn is very difficult to eliminate from the diet, but if you can just eliminate corn syrup, it will have a big impact (honestly, none of us should be eating corn syrup). For other corn products, again, rotate them in the diet to try to avoid a reaction. And remember, gluten can be found in more places than just food. It is in shampoos, soaps, cleaning agents, stickers, stamps, art supplies, and Play-Doh brand play clay. It is used as a filler for hot dogs and processed meats, like sausages and lunchmeat. It is often used to dust french fries, candies, and gum to keep them from getting stuck together and it isn't always on the ingredients list. Casein is also a common hidden ingredient and can be found in odd places like shampoos, soaps, kielbasa and tuna fish. Soy and corn are everywhere, too. For most things your best bet is to cook from scratch because then you know what's in there. There are healthy and safe cleaning alternatives, though they tend to be more expensive, they often work better than the chemical-based products and you use less of them. A steam cleaner is fantastic for bathrooms, kitchens and upholstery. I know that in our case it did take the full 9 months before gluten began to reduce in his system enough to show he was responding positively to the diet (but he was 7 when we started). We did see an almost immediate response after removing casein (within 3 days), so we knew that at least the dairy had to go for certain. It was hard to stick it out for those nine months and even now, 3 years later, I still sometimes find it a challenge (mostly, though, because he has other medical issues related to GI). We recently did do a challenge with him on the advice of his GI doc because he wanted to run the tests for Celiac again. Boy, was that ever a mistake! At first he seemed okay, but after about 3 weeks off the diet I watched my happy, well-behaved, NT-appearing son turn back into a whiney, fussy, stimming, rashy, very autistic-looking mess. It has been 2 months since that trial and he is still hand-flapping and spinning and ornery as all %$$#, not to mention the sensory stuff - OY!.....Needless to say, we won't be doing a challenge again for a looooooong time! Vic I don't know what to say...there are no easy answers. We tried GFCF for about 4 months and didn't seem to be making a difference. In the beginning of August, we re-introduced Gluten-mainly in the form of bread. September was Neel's best month ever-no stimming, great eye contact and a language explosion. Mid-september we re-introduced dairy and expanded his gluten intake- cookies, croissants etc. October has been a very bad month. Finally, Today, I decided I couldn't take it anymore and put him back on the diet. It's probably unrealted to the diet. Could the bad effects of the gluten take 6 weeks to show themselves? And if it is the gluten why would he have such a good month in September? Maybe, it's the casein. I guess it's more likely. But I stopped giving him the casein several days ago and still no change. When we re-introduced casein, we never gave him milk,cheese, or yogurt- just food with a little butter in them like cookies. What do you think? Sorry, no anwswers....just more questions?Kellie, tell me more about the red circles under the eyes and the red cheeks.  Jake gets something like that, I'm wondering if it's the same... ?
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