Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Try taking him off whole grains, just use the cheap fluffy white bread. Try taking him off nut stuff too. Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Welcome, Otilia! Great to see you on here! Hope you get lots of respnses to help you out. See ya soon. tina Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi My son has done better when we took off the dairy but did not see a difference with gluten. I basically don't give him anything that has the word whole in front of it. He eats 2 slices of white bread a day with cashew butter on it or an egg. We also use pita bread to make fahitas with chicken and steak. Mercy otilia95404 wrote: >Hello, > >My son is 3 years and 10 months old. We have recently been >introduced to and have been on a Gluten free/Casein free >diet for about 4 months. My husband and I noticed a great >change when we took out the dairy but no change when we took >out the gluten. We have been consutling with a doctor that >follows the DAN protocol and have yet to see anything positive >take place. We have uncovered a lot of abnormalities but not >helped him significantly. I am on the waitting list to see Dr. G but >feel like time is slipping by. Today was very agressive >with his brothers. I noticed that he bit himself when he was mad >(never happened before today). I have scheduled an >appointment with Dr. Griffiths (works with Dr. G) and will see her >next month. Our DAN doc suggested IVGG because of my sons >immune difficency. Any input? Sorry for the typos, its late and I've >had it. > >Thanks for any help. > > > > >Responsibility for the content of this message lies strictly with >the original author, and is not necessarily endorsed by or the >opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 My son also regressed on the GFCF diet. I have heard Dr. G theorize that this is due to the whole grains used to replace the wheat. Dr. G recommends NO whole wheat nor whole grains. Common, cheap white bread is the right choice with these kids because the wheat has been processed down to nothing. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Otilia, We use Mocha Mix (non-dairy coffee creamer). Tastes great and doesn't offend our system. Tina Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 I can only give you our experience: > My son is 3 years and 10 months old. We have recently been > introduced to and have been on a Gluten free/Casein free > diet for about 4 months. My husband and I noticed a great > change when we took out the dairy We really noticed the removal of casein- in the form of suddenly talking in sentence and no more ear infection. We still had other issues (medical) which is why we went to gluten removal. Of course, our cultural background has a high rate of lactose intolerance and I , myself, am allergic to milk so this was logical. >but no change when we took > out the gluten. My first question would be a.) how gluten free is gluten free? I ask because we didn't fully remove gluten (ie, gluten in soy sauce, gluten in soy milk or rice dream, gluten in...) until much later. It was after 6 months of very very very strict GF removal that we finally convinced ourselves. How? He had a gluten cheat. He had bowel issues right away and had weird stimmy kind of behaviors. It wasn't a " sudden " awakening upon removal of gluten but a very slow and very gradual thing that happened over a long period of time (he gained 8lbs in the first year of gluten removal- not bad for a child who gained NO weight between 3-4 and lost half a pound during preschool!) For us, processed versus whole wheat is not the issue- gluten is. I somewhat suspect that our child was and is a celiac child. We never did the biopsy but the weight gain and bowel issues and the low iron levels should have been warning signs to pediatricians. Over the course of the year of very strict gluten removal, his eczema also cleared. By the time I learned about celiacs, our child had already been very strictly gluten free so any test would not have uncovered celiacs. 2. ) my second question is how long have you been at it? I have been told that for some children (no scientific proof on this one for me to give you) gluten removal must be strict and over a period of up to 6 months. Some parents claim that there is a withdrawal period where the child will regress behaviorally. We didn't experience this but others say that they have seen it. If you have any other questions, please feel free to email me privately. I don't mind sharing what we do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi! I have two kids who are GFCF. My first one showed huge withdrawl signs for the first five days but made significant improvement after that. After about a year the eczema began to return and at Dr. Goldberg's insistence, we also started watching the whole grains. Needless to say, being gluten and whole grain free is a challenge, but the eczema did disappear again. I have found one cereal and a few bread mixes that meet these criteria, so I bake alot for him. If you want the titles to the recipe books or the names of the cereal and breads, let me know. My third child is also GFCF and didn't show any immediate behavioral improvement but the diahrea stopped and she began to gain weight. I truly believe she is celiac (but I'm not willing to do the biopsy to prove it - the diet is working just fine and the food is already in the house). Before giving up on the gluten free diet you might want to be really sure you are totally gluten free. It took me about 5 months to completely remove it from my son's diet and we still goof up every now and then. The website gfcfdiet.com has been wonderful for me. After you are convinced that gluten free isn't making a difference you can set up a challenge. If nothing happens then your child may not have a gluten issue (my second child doesn't). The whole grains definately cause problems for all three of my kids, so watch those like Dr. Goldberg suggests (I would imagine he'll say the same thing when you meet with him - I'm a firm believer in gluten free for my kids but he has had us challenge it because he has seen most kids do fine with just whole grain free - that wasn't a healthy week for my kids...). Hope this helps. Keep us posted on how your son is doing. On Fri, 28 Dec 2001 06:05:18 -0000 " otilia95404 " <otiliasullivan@...> writes: > Hello, > > My son is 3 years and 10 months old. We have recently been > introduced to and have been on a Gluten free/Casein free > diet for about 4 months. My husband and I noticed a great > change when we took out the dairy but no change when we took > out the gluten. We have been consutling with a doctor that > follows the DAN protocol and have yet to see anything positive > take place. We have uncovered a lot of abnormalities but not > helped him significantly. I am on the waitting list to see Dr. G > but > feel like time is slipping by. Today was very agressive > with his brothers. I noticed that he bit himself when he was mad > (never happened before today). I have scheduled an > appointment with Dr. Griffiths (works with Dr. G) and will see her > next month. Our DAN doc suggested IVGG because of my sons > immune difficency. Any input? Sorry for the typos, its late and > I've > had it. > > Thanks for any help. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 I'm not really sure what the norm is, but my kids react immediately - their eyes look sick (red, puffy, glossy) and their eczema behind their ears shows up within a few days. When I put my second child on the GFCF diet her behavior became worse and she improved when we added gluten back. I'm glad your son is doing better! It just goes to show that they are all so different... I'm jealous that you can go back to a regular diet I did start my GFCF kids with Cheerios, and Dr. Goldberg said that may have been too much and to try regular white bread. We are at a good point now in the treatment and I hate to upset anything - maybe next summer I'll try again. I'm glad it worked out for you, though! On Sun, 30 Dec 2001 21:23:03 -0800 Otilia Sullivan <OtiliaSullivan@...> writes: > , > > We have been totally gluten free for 4 months. I have removed > everything > from my son's diet. We even worked with a consultant that helped > us > discover hidden gluten. What was interesting is that I took my son > off of > Almond milk per the suggestion of one of the other parents on the > list > and his behavior improved. I also let him have breaded chicken > strips one > day that were made with white bread crumbs. That child ate like I > had not > been him eat in years. I have to tell you it brought tears to my > eyes. The > next day he did great and his bowls have been fine. He is talking > more and > happier. Finally he go some protien in his body. How soon would I > see a > negative reaction if gluten was a problem? > > Re: Help-getting worse not better > > Hi! > I have two kids who are GFCF. My first one showed huge withdrawl > signs > for the first five days but made significant improvement after that. > > After about a year the eczema began to return and at Dr. Goldberg's > insistence, we also started watching the whole grains. Needless to > say, > being gluten and whole grain free is a challenge, but the eczema > did > disappear again. I have found one cereal and a few bread mixes > that > meet > these criteria, so I bake alot for him. If you want the titles to > the > recipe books or the names of the cereal and breads, let me know. > My > third child is also GFCF and didn't show any immediate behavioral > improvement but the diahrea stopped and she began to gain weight. > I > truly believe she is celiac (but I'm not willing to do the biopsy > to > prove it - the diet is working just fine and the food is already in > the > house). Before giving up on the gluten free diet you might want to > be > really sure you are totally gluten free. It took me about 5 months > to > completely remove it from my son's diet and we still goof up every > now > and then. The website gfcfdiet.com has been wonderful for me. > After > you > are convinced that gluten free isn't making a difference you can set > up > a > challenge. If nothing happens then your child may not have a > gluten > issue (my second child doesn't). The whole grains definately cause > problems for all three of my kids, so watch those like Dr. Goldberg > suggests (I would imagine he'll say the same thing when you meet > with > him > - I'm a firm believer in gluten free for my kids but he has had us > challenge it because he has seen most kids do fine with just whole > grain > free - that wasn't a healthy week for my kids...). > Hope this helps. Keep us posted on how your son is doing. > > > > > On Fri, 28 Dec 2001 06:05:18 -0000 " otilia95404 " > <otiliasullivan@...> writes: > > Hello, > > > > My son is 3 years and 10 months old. We have recently been > > introduced to and have been on a Gluten free/Casein free > > diet for about 4 months. My husband and I noticed a great > > change when we took out the dairy but no change when we took > > out the gluten. We have been consutling with a doctor that > > follows the DAN protocol and have yet to see anything positive > > take place. We have uncovered a lot of abnormalities but not > > helped him significantly. I am on the waitting list to see Dr. G > > > but > > feel like time is slipping by. Today was very agressive > > with his brothers. I noticed that he bit himself when he was mad > > > (never happened before today). I have scheduled an > > appointment with Dr. Griffiths (works with Dr. G) and will see her > > > next month. Our DAN doc suggested IVGG because of my sons > > immune difficency. Any input? Sorry for the typos, its late and > > > I've > > had it. > > > > Thanks for any help. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 In a message dated 12/31/01 4:22:35 PM Pacific Standard Time, pappadia@... writes: > How soon would I > > see a > > negative reaction if gluten was a problem? > We recently tried a gluten challenge with our 4yo daughter. It took about six weeks to see really negative effects, though she was slowly becoming more aggressive over the course of the challenge. Things started extremely well; she was much more focused and happier to start with. Margaret Quote Link to comment Share on other sites More sharing options...
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