For anyone who is interested -
MY son began the GFCF when he was two and a half years old. I was still breastfeeding my newborn and had tons of stress in my relationship, but I went NUTS over this diet. I wish now that I wouldn't have put so much hope in the diet. Luckily I also taught myself ABA therapy from Dr. Lovaas's books (I love Lovaas, I know some of you probably don't but I think he is a genius). Anyway so I checked out all these books from California through the inter-library loan system and they mailed to my home, and I would just read them for hours and take notes. I make my own velcro boards that were used in the book, and I kept ABA reinforcers in bins above the refrigerator. So I also did a LOT of ABA, self-taught and undocumented but still very effective for what I could do. We did not have enough money for ABA therapy or I would have amputated my own feet if I had to just to get it for him. So I just had to do the best I could. He had a speech tharpist (her name was Mitzi LOL that was her real name, she was awesome) come once a week to the house. He also had a teacher come once a week from the school system to work on things with him, and he attended Gymboree play & music classes for social skills and to work with his motor delay. We literally trained him how to jump in his Gymboree class!
So anyway I went nuts over the diet also. I spent hundreds of dollars on special food, baked my own graham crackers and Goldfish (as in roll out the dough, cut up the crackers, ect), baked all my own bread, made GFCF mac and cheese, drank soy and rice milks, ect. I did everything 100% GFCF for one year. I did notice a LOT of improvement, but I honestly do not know how much of it was the diet and how much of it was age/ ABA. It is so hard to tell when they are that young. The reason I quit the diet is because he had become so limited with food that he was losing a lot of weight. I was very concerned that he was not getting the nutrition he needed, and the doctor had reccomended Pediasure but I could not give it because it contains caseinate. I was very reluctant to give up the diet, but I had not had luck with anything else. Kirkman vitamins were a total waste of money - I literally poured them down the sink because I had to throw out the bottles. I was getting very frustrated with Miracle prodicts, like Reliv, that promised a cure. Gage was the smallest, skinniest, shortest child in preschool when he turned 3. The other kids his age were much larger and bulkier. They called me in for a meeting and had my look at him through the glass window to see how small he was. I took him to the pediatrician and we ruled out any other growth issue - he was still on the curve, just very small. Finally I took him off the diet. He thrived on regular food - he grew very quickly and filled out. Still skinny but he finally seemed to be growing. The only thing that came back was the stimming. I noticed a definate reduced stimming while on the diet. But that was it. I decided that it was too much cost, time, health rick, ect. to continue the diet just to avoid the stimming.
Sometimes I debate wether or not I should do the diet again. Gage is actually starting to get a little chubby for the first time ever! And I noticed all of us ate a lot healthier because almost all of our food came from the local organic co-op store. I sometimes wonder if the changes would be more noticeable now. But whatever people try, it has to be seen as an EXTRA, NOT as a cure. I do not believe it is a cure. I believe it can somewhat alleviate certain symptoms. You wouldn't say a diet can CURE diabetes, but it helps regulate blood sugar. It is the same with GFCF, IMO.
The diet is extremely expensive, even if you make everything yourself from rice and potato flours, and it is extremely time consuming, and it may not alleviate your child's symptoms enough to warrant the extreme life changes you will have to make. I had to make phone calls every time I went to make purchase, just to see if they manufactured any wheat products because of cross contamination. I was constantly baking and cooking - time that I feel would have been better spent working on bonding and playing with my toddler. Anyway I hope this helps someone with their decision. I don't know if it worked or not - who knows? I mean maybe it is the reason why my son is so high functioning now, when he used to jsut roll cars on the floor in front of his eyes all day. I have no way of knowing. But in retrospect I wish I had spent more time on bonding, floor time, and educational interventions than the diet.
My son also has issues now, as a "big kid". He recently started have constipation a LOT and has to take Milk of Mag and Metamucil wafers. This is mostly because he refuses to eat so many foods that his diet consists of lean meats, salmon, and carbs or bread (rolls, plain pasta, ect.) He also eats cheese & yogurt, but his diet is SO limited that it has really been a nightmare. I loathe meal times. I can never cook "new" foods because he won't eat them. All the traditional type foods like casseroles, potato salads, chilli, soups, ect are OUT because he won't eat anything that is blended. His food issues are constant source of stress for me. I did not notice him eating any better on the diet, except that the breads and roci/ soy milks and things were a bit healthier. But mostly he ate plain turkey burgers, GFCF french fries, grilled chicken, salmon, homeade bread, cereal with rice milk, soy yogurts, ect. But he always craved (and still does) cracker type foods. I am thinking of trying another round of the diet just to see if it would improve him speech and stimming.
Hope 2 looks like you have been doing a GREAT job with your kiddo
I had a similar expereince on the GF CF diet - and its much easier to live without being on the diet - !
Hope. Mealtime was very stressful for us as well.
After being on the diet for several months, a few naysayers convinced me that I was crazy and Liam was fine. So we loaded him up with his favorites. Cookies....goldfish....cheezits...and spaghettios. After going to bed for the evening, he woke up holding his belly, his nose was runny and he had loose runny stools for two days after. The naysayers are now "ayesayers", if you get my drift.
We notice that we can sneak small amounts of cheese into his diet, so pizza is good for us. We simply toast his bread, add sauce and cheese and heat in a toaster oven. PB and J. We eat steak, pasta with sauce, any veggies (as long as they are frozen), fruit (frozen) and fruit sorbets. (they now sell them in little jello like containers...just throw them in the freezer. These days, it is very difficult to give him things he does not like. I never thought it was possible.
Hope2,
We noticed small changes in diet as well though we were religious for a year..cant ascertain 100% if diet made the huge progress she made either as we were doing ABA and speech at the same time. Her awareness and eye contact and bowels improved enough to keep us honest on the diet. Once off the diet the constipation came right back..I love Benefiber..it can be mixed in apple juice or any liquid or foods..no texture/flavor or color at all..you can mix it in water. Sarah gets a tablespoon everyday with juice...sometimes 2 tablespoons as needed:) I do notice her more zoned out when she has too much milk so I limit it..it is good she doesnt like it so much:)
Hello Hope. I wanted to add my experience to yours. Around 18 months, Liam began showing signs of major gut issues. A family member (Physicians Assistant) told me I should look into GFCF. My family doc agreed that it would not be harmful and he would monitor his weight. etc. Fortunately, we have a local health food store who carries all of these products. The young lady that owns the store "speciailizes" in spectrum issues. She has EVERYTHING you can imagine. She has weekly shipments sent from the glutenfreebaker.com (who is also local for me). The diet, therefore, has not been intrusive on my time.
I never started Liam on the diet for anything other than his gut issues. Within weeks, I saw improvements. I also found that his diet expanded. Removing goldfish and cheezits (which was the bulk of his diet), actually allowed room in his belly for wonderful things. His intestinal problems are all but gone. I did however notice some major increases in awareness and eye contact. But that was just icing on the cake (Gluten free of course) for me, as it was not my original intent. He will be 3.5 at the end of July. He is 43 lbs of hard flesh now, with no somach distention and no appearance of pain.
My DH and I have done flash cards, pretend play with cars and dolls, numbers, letters, swimming, jumping etc. in our home since for over a year. He is not the same boy he was at 2.5. We are not sure if it is maturity or the things we did (all while the professionals told us everything was OK). Now we have EI in the mix and are hoping to improve even more.
However, his gut issues have improved, which was my intent to begin with.
TY for all of your thoughts. I think maybe I should do another "trial" now that he is 6 and a half and hopefully I could notice more distinct changes.
Our decision to go GFCF is similar to YepperBepper's. Ds has had alot of gut issues since birth from reflux to constipation,runny nose and was never hungry. We had an allergy blood test done and he came out allergic to wheat, soya,nuts and egg whites. Our main concern was to fix his gut and address his allergy issues. Although the results didn't say he was allergic to milk, since ds isn't a huge milk fan, it wasn't difficult to cut milk and he is quite happy with the rice milk alternative.
His bowel movements have improved and he definitely has an increased appetite and he is a less anxious and happier kid overall.So I would say the GFCF diet definitely works for him when it comes to improving his overall health.