Should I stop GFCF diet???Can't really say what I've been told re diet, or my opinion here for fear of a lynch mob!  If you would like my take on it, please feel free to PM. (If stools WERE ALWAYS loose, check with pediatrician, maybe some type of digestive problem?) Also, are you administering diet on your own, or through DAN doctor? My son turns 2 this coming weekend and has been on the GFCF for 3 full months. We went on this diet because of a loss of language at 19 months old. He has been given a PDD diagnosis with further Autism testing coming up. Since being on the diet we have noticed improvement in his affection towards us and less temper tantrums. However, my husband and I cannot seem to wonder whether or not the changes we have seen in him may be attributed towards him getting older and maturing or the fact that we started speech, behavior, and occupational therapy at the same time as the diet. I do not want him to have to be on this diet if he doesn't have to be. How do I know if it is working? There has not been any drastic improvements. Should we slowly try to implement gluten and/or dairy back into his diet and monitor the changes or would that be self destruction? Also, I have a question regarding my boy's bowel movements. He has orangish loose stools on a daily basis (usually 3 times a day). He has never really had solid stools and we were hoping this diet might help. However, it has stayed the same. He takes a probiotic daily and that has not done anything either. Any advice??? Thanks so much! Cassandra If you are seeking a solid stool, one thing you could try adding in that has a very low (if any at all) gluten content is oats. Oatmeal, Oatmeal cookies, granola, etc. It will give him more fiber and bulk up his stools to be more normal.We have one that has been GFCF for almost 2 yrs. We will not take him off due to a 15 minute grand mal seizure when tried a small bite, literally a few crumbs 12 months ago. We have another one we will not take off for a while, tried a sip of milk last week and 3 days of white extremely foul bm's along with bleeding rash, no thanks. We have 2 more that are making big improvements in their functioning levels. BUT, we work with them (therapy style) literally for hours every single day and night. We are thinking of trying them back now to see if we notice any back sliding. I guess we just want to know, "WHAT" is it that is making this huge change? I don't think their 2 hrs a week of therapy I take them to at school are making any difference. I wouldn't wish this diet on anyone, it seems to really stress people out and make them bankrupt. It was not the case for us. We already eat sort of whole foods (natural bulk stuff vs. processed, not expensive at all) kind of stuff so we just switched grains and dropped the dairy on the GFCF kiddos. Our grocery bill actually went down and our health has seemed to improve in the whole house. If you did go off (we personally wanted to go for a full 6 months) I would try a small amount of something first, as not to shock his system in case it was truly helping him. BTW, how much therapy is he getting? was because it was something we could try. I have some friends who did see improvements with their children. We also had to remove soy with our little guy. If you are going to doing any of the DAN stuff, they really like you to be on the GFCF diet. While, I did not see improvements with our son, I do notice when he gets an infraction. His stools become very loose and watery for a couple of days. have you done any testing to see if your child is sensitive to any items? I would stay on the diet. Even if it isn't helping his stools, behavior improvements are worth the work of the diet, imo. If you really want to know if it is working, give him a cup of milk. Just get the carpet cleaner ready. For loose stools you can use enzymes with every meal. That has helped my daughters stools to become consistently healthy. http://www.kirkmanlabs.com/products/enzymes/enzym_dppiv/Enzy m_Complete_II_Isogest.html I was told it is not the milk or dairy, per se, but the lactose that is the problem (get carpet cleaner ready").I'm getting brave - watch out! Our insurance changes in the middle of February so we are waiting on that... once that goes through we will try to get into a DAN doctor. As for now, we decided personally to try the GFCF diet, along with the therapy. He had a childhood and environmental allergy (blood test) and did NOT show any sensativities to food or environment. He has always had the loose stools... can't figure out why. He takes a fiber supplement and eats bananas... I will try the oats. The gut issues would make me think that some sort of nutritional intervention would be helpful It may not be GF CF i t may be enzymes or something else We did GF CF but with the same situation as you - son improved slow and steady - but we had started everything at the same time - so we got off the diet but did not tell his therapists and in fact saw the same rate of improvement continue - and the therapist's reports confirmed that steady and continuous improvement I wish the GF CF wouild have worked for us its a hard diet to do but still doable in my opinion and atelast soemthing we can have a little bit more control over [QUOTE=Notime]I have some very strong opinions about the diet. We tried it for my son also. It works for some kids, ahem, not for others, ahem.Can't really say what I've been told re diet, or my opinion here for fear of a lynch mob! If you would like my take on it, please feel free to PM.(If stools WERE ALWAYS loose, check with pediatrician, maybe some type of digestive problem?)Also, are you administering diet on your own, or through DAN doctor?
[/QUOTE] Where are you from Notime? You crack me up. The Lynch Mob You remind me of myself and it seems we do have some stuff in common (dogs). Anyhow, I will state my opinion. I do not do the diet, Abby will not try it no matter what I do and I am not going to starve her in order to accomplish this. She has progressed since spring and she was never on the diet. She just recently had two evaluations and both of those doctors , well one being a PHD neruopsychologist and one just a regular psychologist both said that the that GFCF diet only works with about 10 to 15% of Children. Hats off to those it did work for. But I don't think it is for everyone , Medically maybe.
The GFCF diet has been a miracle for us. Up until this October, my DD had daily nuclear meltdowns, severe separation anxiety, needed sensory breaks every 10-15 minutes at school, and wasn't making any progress in her speech & OT sessions after months of therapy. Finally, in desperation, I decided to try "that crazy diet" that all the medical professionals had warned us was "just a bunch of hooey." The main reason I decided to try it is that her physical symptoms fit the profile of a kid with gluten intolerance: from about the age of 2 weeks, she had bright rashy pink cheeks, bumpy rashes on her arms & legs, chronic constipation, and chronic yeast diaper rash. None of the various creams and prescriptions our ped. recommended were ever much help. Within 3 weeks of eliminating wheat & dairy, DD became a completely different kid. Her physical symptoms cleared up. She had no more tantrums at all -- and I mean none, zip, zero. Her separation anxiety vanished almost literally overnight. She no longer needed =any= sensory breaks at school. She started making astonishingly fast progress in her speech & OT sessions. And for the first time in her life, she became interested in kids her own age. I know GFCF doesn't work for everyone. But it has truly been a miracle for us and I only wish we had tried it sooner. I hate to see anyone discouraged from trying it. I would read CHILDREN WITH STARVING BRAINS and SPECIAL DIETS FOR SPECIAL KIDS for more info about how & why it works. Dr. McCandless in the STARVING BRAINS book says she has seen GFCF work for 80% of the kids in her autism practice. I would be tempted to stick it out another month only because I read in some of the books that it takes 3 months for gluten to completely leave the body...casein only takes 3 days. We started out with the casein diet for 2 months and dd's chronic constipation problem was totally gone within a week and she potty trained a week later. Then 2 months after that we started the gluten free which was a lot more difficult. So we have been on the gfcf diet strictly for 3 weeks now and I have not noticed a change and actually her anxiety has gotten worse but I hear there is a withdrawl period sometimes? Hang in there. We are giving it at least 3 months, maybe 4 just to be safe but we are definetly staying on casein free or at least dairy free because it is a factor in our daughter's GI issues. Is he eating/drinking a lot of soy?This happened to my first gfcf son 2 months into the diet and he was on soy milk. AFter we took him off of that he improved greatly. We considered brown rice to be important in his diet also because it bulks him up naturally. Also if your child is drinking soy it is important to make sure it doesnt contain malto dextrin from wheat- thiscould be contributing to the diarrhoea- it was with my daughter - I didn't realize soy milk ingredients vary between brands. Now we are trying rice milk after using soy for years just to vary things( it actually tastes nicer I reckon) Liz If you're already doing it I'd stick it out a bit longer then reintroduce and see if you see changes. I never noticed any difference with my son but kept him on it for 2.5 years. I was terrified to reintroduce because we started young too (18 months here) and I figured how did I know whether it was helping. Anyway, we do gluten casein once a week now with enzymes and no issues. For him, though, diet does matter. Turns out he has a metabolic condition and that was what was bothering him with food. Enzymes are a good middle ground between diet and nothing. The orange loose stools. First, loose stools could be yeast or bacteria (c. diff is common in autism..and nasty smelling). Orange stools. Does he eat orange vegetable/high beta carotine foods or drink veggie juices? raney, I called for the appt in December and was told the earliest was February, I'm not sure if that was just because my son is a new pt or what. The DAN doc in our area will only see new pts at 1pm because its the first appt in the afternoon and he likes to monimize the time that the kids have to be in the waitng room, the appt itself I was told will take about an hour. I agree with Selam, although I do think that because our childrens diets are so restrictive as it is, that seeing the Doc to find out what supplements your child needs(if any)and what foods their body can or cannot tolerate is a good idea. Thats why I am taking my son, not because of behavior or speech, he has been making steady progress in speech and other areas since the summer, for us its more of a health issue, my son too only has about a one to two food meal choice per day, but here lately he has been limiting his food even more so, so I'm concerned as to what I need to be giving him to make up for his lack of nutrition. I know alot of parents who just go to the health food stores and get what they read about but I would prefer a Doc to recc the supplements, the dosage and have my son tested to make sure he actually needs all the stuff that you read about. Just my way of doing it  My son does not get much soy... he drinks almond milk and only gets about 4 ounces of that a day. He is soooooo picky about the foods he eats and so we only have about 3 options for lunch and dinners. I just am at a loss for what to do. How long did it take for you all to get an appt with a DAN doctor? Again, our insurance changes in the middle of February so I can't make an appt until then and am wondering how long we are looking at. Do I need to have DS tested again for food sensativities by the DAN doctor or will the blood test for food/environmental allergy report be enough? I just wonder if they go into more detailed testing than the common food allergies like wheat, dairy... Ok now I need to know a little bit about the enzymes. I was looking at the Kirkman enzymes... how many capsules do you give to a 2 year old and can you crush them up and put them in juice? I think I may order a bottle and try this to help his little tummy. [QUOTE=Notime] I have some very strong opinions about the diet. We tried it for my son also. It works for some kids, ahem, not for others, ahem. This message board feels like an online family & I would hope that everyone would agree to disagree on some things. Notime - I hope you will share your experience with us. I'm neither for or against the biomedical stuf. I agree that it works for some people and others have reported no change at all with it. I personally decided NOT to try it just yet for the following reasons: (1) my son has absolutely no physical symptoms such as sleep problems, stool problems etc. (2) I feel like it's too hard for 2-3 year olds to be on any kind of diet restriction unless absolutely necessary since most toddlers self-limit their diet themselves. I think I'll probably try the diet at some point but not now. One thing I wanted to share with everyone is something I learned this past weekend at a presentation entitled "Figuring out what works for your ASD child". Basically, it was about how to decide on a specific intervention, how to take data & measure it's effectiveness. In order to determine if an intervention works, you have to have prediction, verification & replication. Predication just means starting an intervention with the expectation that it will produce a certain result. Verification is done by terminating or pausing the intervention to see if the desired effect stops when you stop the treatment. Replication is repeating the treatment and getting the desired outcome again. Verification & Replication are important to make sure that it's not other coincidental factors bringing about t he change rather than the treatment. Cassandra, in your case, you have been doing other therapies at the same time so the only way you can DEFINITELY know whether the diet is effective or not is to stop it for some time while continuing the other therapies (verification) and then to re-start it at a later point (replication). I read some replies here saying you should wait 4 months before stopping it so that may be a good idea to the diet to take maximum effect. I hear you though about not wanting to continue it if you don't have to - would make your life a lot easier... We are in a similar situation. Our DS has been on the diet about 4 months now. He is 2y10m old and we really are not seeing anything great from it. He still has circles under his eyes, he still gets constipated... We are treating for yeast (did 2 months of Nystatin, now on 1 month of ThreeLac) He does take Kirkman's DPPIV Enzymes with lunch and dinner and he is on a bunch of other supps. We are very tempted to try the Houston Enzymes and reintroduce some dairy first (since it leaves the system faster) and then try the Gluten. Not sure if we should give the diet a full 6 month run though first or not. I just feel like if he were truly a candidate we would be getting something that we could see by now. Any thoughts? Thanks! Lynn (new to group) We have tried the gfcf diet and coupled with extensive therapy. we told the therapists that we were doing the diet. But when we decided to stop the diet, we didn't tell them. No one noticed a difference in the level of his improvements. We have taken our son to a Naturopathic doctor. We found that he may have allergies or sensitivity to corn, corn syrup, strawberry (which he loves) and soy (been drinking soy milk form the gfcf diet). We have eliminated the above from his diet (corn or corn syrup is in almost everything) and he is doing incredible. My suggestion is find out what sensitivites your children have to which foods, through some form of allergy testing. The naturoapthic doctor did the testing without drawing any blood. eliminate those items from the diet, before doing the gfcf right away. what i like most about the approach the doctor took was not trying to sell us 5 different bottles of $40 liquids my son wouldn't drink. I saw results within in weeks. Initially we just tried casein free. My sons hyperactivity dropped right down he was able to faocus on tasks. If he had dairy again he would become very hyperactive almost high in his mood and then start screaming hitting himself and running into walls. Even hand flapping a stim he never does unless he drinks milk. Both mu kids are ASD. Roslyn always had diarrhoea so we went gluten free about 2 years later found this very difficult at first, but h her diarrhoea stoped after a week. It returns when she sneaks the wrong food. It didn't take months to see results and we tried then back on the foods again at outr paediatricians advice. The doctor was surprised it worked. We initiated the diet with the help of a dietician(so the kids were still well fed) at my request as we dont have access to DAN doctors here. LizBrown rice is very healthy.The diet is not for every child. I have been doing it with my 5 yr. old son since Sept. I thought I saw a withdrawl period, then some improvement after he'd been on it for a while. I saw a negative response when he got bread over Christmas. Then through Jan. and Feb. he through a regression. At the beginning of the month his behavior and communication skills began to improve. I also noticed that even if he ate bread without me catching him first he'd still have a really good day. So I took him off the diet about a week and a half ago and his behavior is still improving. Being off the diet hasn't really affected him. The only thing is within the last few days I've seen him hit his head every once in a while, but nothing severe. The diet probably works for some children, but not for all. You have to decided what will work best for him. Also, I read that he was diagnosed with PDD. Do you know yet where he falls in the Spectrum because PDD is not specific. Autism, Asperger's, PDD NOS, Retts, and CDD fall under the PDD category. |
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