How to start on diet? What doctor?
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I have been thinking about doing the GFCF diet for awhile but my son is such a picky eater im afraid he will strave to death on it! But im thinking might as well try and i know there are online places we can buy all kinds of food (i was just looking at azurestandard.com) But since ive had a scary experience with probiotics what doctor should we consult with if any while starting the diet? Rather how did u guys go about it? Im lost and even more lost when i think about how hard it will be to keep the diet going! But id like to try it what if it helps. So is there any good 'just starting' websites? O yes and what tests have u done (if any) for ur kids before starting the diet or can we just start them on it? A good site for ordering food or recipes? A doc/therapist we should consult? Anything else i should know (i cant even think of all my questions!) When we first started our boys on gfcf diet, I was just like you, full of questions and since we live in a very remote, rural area, I had nobody to ask away ... this message board was a God-sent for me. I would suggest to you to start slowly, by switching milk only at first. We tried soy milk at first but one of our boys had a hard time with it so we are now using rice milk (available through many typical grocery stores). Just as you did when first introducing baby solid foods in their diets, wait a couple weeks before introducing anything else new. (cheeses, yogurts, etc. check out your local health food stores for gfcf substitutes) Then you can get a good gluten-free book from your local library and try some of their recipes, at home, using similar meals to what they are already used to eating, just using substitutions for certain gluten ingredients. (our boys love pasta so I make our sauce from scratch and I use rice flour pasta) This is much cheaper than buying foods already made (takes a while to get the hang of baking with a different type of flour at first but you'll get there) Having some of their favorite snacks in the house, all ready to go is a good way to make sure they will be eating. I keep cut-up raw vegetables and different kinds of fruit in my refrigerator at all times. I also buy some gluten-free crackers in different flavors, to have on hand for "nibble attacks". Good luck to you. Claire in Canada We did what Claire did.We got GFCF cookbooks at the library. And scoured the internet for ideas. We started with milk, and went to nut milk (we did soy for the 1st mo but he had bad reaction to it). We learned how to take casein out for the first 5-6 mo or so, then we took out gluten. For us this was easier than all at once. I never tried to duplicate things like mac n cheese or pizza. But I found realy yummy things my son loved, like home made roasted potatoe wedges with olive oil and herbs instead of french fries. And lettuce wraps like PF Changs, but very cheaply homemade. :) For us, it was easiest to start with removing the casein first. I went and bought 1 almond milk, 1 vanilla & choc almond milk, 1 rice milk and 1 vanilla & choc rice milk and had DS test them all. He then got to choose which one he like best. He chose plain rice milk. This makes them feel like they have some control over the decision. Then I continued to learn and educate myself on what has milk in it. We switched to rice yogurt, cheese and ice cream. The hardest part about the milk for us, was chocolate. They do make some stuff thats choc flavored. Next thing I did was go to a couple different natural food stores and literally just wandered the aisles trying to learn. This was a HUGE help. These special stores (by us anyway) all label what is gluten free with a tag placed on the shelf. So then I just had to find any hidden milk. I asked a lot of questions from the store clerks too. Next get some GFCF cookbooks. Look online for his favorite recipes and start testing with some substitute recipes. I'll be honest, this diet is not easy. It's extremely frustrating and takes a while. And everytime you think you've got it down pat, you find something else with wheat in it. But I promise you, it's worth a try. For us, I can not stress enough how big of a difference we saw just after taking the milk out. It's really unbelievable. I'm still not 100% GFCF, but we've taken our time and have seen huge benefits already. There are some that go cold turkey, but I'll tell you my biggest fear was what the level of withdrawal my son would go through. 4 days after removing the milk my son became extremely agressive, and the meltdowns were terrible. This proved to me that it worked. About 10 days after the diet, my son started talking and playing with toys. About 2 weeks after the diet he started to feel pain. I'll never forget the day he fell and skinned his knee and cried, and I cheered. I was so happy that he felt pain. Couple tips; 1) keep a diary. Because for me, I saw such a change so quick I started thinking I was crazy. A good thing I do to help me stay sane is about once a month I do the childbrain survey and print it out. Every month our score gets lower and lower. 2) I have started having my local grocery store stock up and order the rice milke and a few of my kids' favorite snacks. This way I don't have to make special trips to the natural food store all the time. We have 2 grocery stores and both were more than willing to help us out. They even call us when it comes in. 3) Keep your receipts for this food. You can claim the price difference on your taxes. 4) I always buy GFCF snacks that are on sale to try. It keep me from getting sticker shock and it allows us to continuously try new items. 5) Once you dive into it, for me, the absolute hardest part is making sure everyone ELSE sticks with it (husband, sitters, aunts, grandmas). I have had to limit DS' visits to grandma's because of this. She thinks, "well, what's 1 cup of yogurt if he's hungry?". Well, when he's slipped a "mickey" 6) And finally, take it 1 day at a time. Try not to overwhelm yourself cuz you'll be less likely to stick with it. K. Sorry so long. I absolute praise anyone that's willing to give it a try. It doesn't work for everyone, but boy it's sure helped a lot too. Good luck and I'm here if you ever need to chat. Why can I never get everything out in 1 post?!!? There are a few brands, restaurants that are good for this diet. you'll still want to check the ingredients but overall they're good. Check these out: http://gfcf-diet.talkaboutcuringautism.org/autism-diet-gfcf- foodlist.htm http://www.conductdisorders.com/forum/showthread.php?t=373 for tips, http://en.wikibooks.org/wiki/Cookbook:Gluten-Free#Cornstarch Here is a list of no-no foods, I printed this out and put it in my purse, my husbands, wallet and gave copies to all that take care of my son. It's so much easier to cross reference when it's right there. http://gfcf-diet.talkaboutcuringautism.org/hidden-sources-of -gluten.htm
**sigh** so I just reread your message and realize I didn't answer a few of your questions. We just recently started seeing a DAN doctor in Seven Hills, OH. He's wonderful. But I think most people have already started the diet before seeing a DAN doctor. Although they can run some tests. My kids are in the midst of having blood, urine and stool tests done to check for yeast, metals, etc in their body. This will tell us if we need more than just the diet. I also want to forwarn you, I had several doctors tell me the diet was a waste of time. My DS' devi pedi literally rolled his eyes at me and told me it was rediculous. Don't let these people discourage you. So, be selective on who you tell if you are easily discouraged. 1 last tip - (I promise I'll stop www.tacanow.org has a good informational website for starting out. You can find DAN doctors in your area at www.autism.com/dan/danusdis Good luck! _________________________ mom to 9 year old boy/girl twins (Asperger's/PDD-NOS) Thankyou everyone! I think i will go slowly just the thought of going cold turkey makes me stressed! I have tried soy milk and he didnt like it but i think he would love rice milk! Shandalyn, thanks for all the info and links and everything! I think i will keep a diary, thats a great idea! I had no clue we could write off the reciepts for this food, thats great@ thanks! I also didnt know i couod special order things from the grocer i will def. look into that one. Me, hubby and our son all eat differnt things so that shouldnt be THAT hard lol My husband is just as picky (sometimes i think MORE) than my son he wouldnt last on the diet but i think he would actually benefit from it so i am going to TRY to persuade him lol I have mentioned this diet to one of his doctors and they basically scoffed and said it was nonsence so I think ill prob have to look for a dan doctor to be taken seriously! I am always adding or re-editing posts so dont worry mbmom, thanks for the link! I havnt gone thru any of the links yet but def will! THankyou everyone for all ur advice and support!
Definitely go slow! Some kids have a bad reaction to going cold turkey, and they're more likely to protest anyway. It's just as well he didn't like the soy milk. Most DAN docs will tell you to avoid it too - it's chemically very close to casein and gluten, and growing boys don't need that much soy (phytoestrogens) in their bodies anyway. My kiddo loves rice milk, but be careful of the brand. One, I think it's Rice Dream, actually has gluten in it. Good luck with the diet. It's been amazing for us! Janie, I will def. go slow lol Id go kookoo if not but that is what i was thinking i had to do for so long and I always though my son would die of starvation if we did this (very picky eater!) He also tends to become obsessive (only eating once thing at a time for awhile). Thanks for the headup on the rice milk. I think he will love it ive tasted it from hubbys uncle who drinks it because of his high cholestorol (i thnk?) and it tastes really good and sweet. I cannot find a DAN doctor near us, we will have to drive out of state (but whats new!) but how often do u have to go see them? And how much are they? Im thinking they are not covered by insurance? We just saw my sons psychiatrist and it cost us 150. i almost fainted (was expecting a 50. copay Anywho, thanks! I wouldn't trust my pedi with these types of tests. They don't know/understand what to order, or what to look for once the results arrive. I would invest in a DAN. They are not cheap. Our first visit was $400. They vary. But really once you have your initial visit, do your testing and then the followup visit, it's really up to you. I only plan to go for our followup. BTW - I am not the martha type!!! LOL So far from it. I just gave you suggestions of what I've heard, I buy mostly store made stuff. It's fairly easy for me right now cuz my son only eats 5 things. There are a few DANs around who will file for insurance, but it's pretty unusual. Our initial visit was $370, and we do follow-ups on the phone for 140/half hour. Most of what we do, though, takes place via email, and he's never charged me for that even though his paperwork says that he does. It's the testing that can get really expensive, but if you can manage it, it's worth every penny. The first visit was expensive--I paid up front, filed ins and they paid me back 60 percent. Generous of them. After that we do phone appts. about 100 bucks for a half hour. We talk once a month, usually but sometimes spread it out if all is going well. We only need to see him in person once a year. testing is covered by our ins. so not too expensive there. The one test not covered was food intolerance test and I just saved up till I had enough to pay for it. (160) |
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we deal with behavioral problems for a few days after. 
Im so glad ur son is doing so great on the diet, that is encouraging for me to hear thanks for sharing!