We started our son Liam at 18 months on the GFCF diet (he is now 22 months) due to signs of autism....We began this journey by first getting a Defeat Autism Now (DAN) doctor for our son, which you can find by going to the Autism Research Institute's website at http://www.autism.com
and clicking on 'list of clinicians' on the right hand side. Some states do not have DAN doctors yet, but hopefully you can find one relatively close. We had about a 3 month wait for an initial appointment here in Cincinnati, OH. Our DAN doctor wanted us to complete several tests first (stool, urine and blood) to check for intolerances, hidden food sensitivities, excess yeast in the intestines and parasites. She sent us a huge box of testing tools and paperwork. We did the urine and stool collections at home (oh so fun!) and FED-EXed them to the Great Plains Laboratory. I took Liam to the local Children's hospital twice with a lab sheet from the DAN doctor to get eight different blood tests, and once with a vial to send to a laboratory called Alletes in Maine that checks for hidden food allergies. Then at our first DAN appointment (which occurred two months after we started the diet), we discussed all the results and I was given a huge binder of information. Liam did have intolerances to gluten and casein (very high to casein, actually) and a whole additional set of hidden food sensitivities (soy, rice, almond, almost every nut, green pea, watermelon, tomato, etc!). He also had excess yeast but no parasites.
We started the GFCF diet a few months before our first appointment actually after I spent several weeks learning about it and substitutes on-line. You must do the diet 100% to truly be effective. Of course I was giving him brown rice pasta and bread products and almond milk almost daily which may have caused the additional sensitivities because you have to actually rotate the protein substitutes you provide. So if possible, I recommend tests FIRST, then diet changes. At the appointment the doctor recommended our son also take an enzyme with meals to help digest food (he takes Enzyme-Complete DDP-IV II with Isogest from Kirkman's), but I don't think this is a replacement for the diet's benefits. Are you familiar with the medical research reporting that some children on the spectrum develop leaky guts due to yeast imbalances, and peptides (partially digested proteins) of casein and gluten enter the blood stream and bond with neuro-receptors in the brain? You may want to get your son tested for yeast and parasites as well but your DAN doctor would know what to order based on the information you provide. Our son takes several additional vitamin supplements to build up his immune system as well as Nystatin, a yeast medicine, to kill the excess yeast. The DAN doctor and dietitian were VERY helpful and explained a lot to us as well as provided written information to help us understand the leading research and be successful with Liam's diet.
Our insurance (Blue Cross/Blue Shield) did cover some of Liam's initial tests (we payed $300 out of $1500), but not the hidden food allergy test ($220), initial DAN appointment ($350), initial dietitian appointment ($100), Nystatin ($50/month) or Supplements (about $250/month). Your insurance may cover more - and most DAN doctors provide forms to submit to the company. If you cannot afford these avenues at this time, you can try the basic GFCF diet and still have tests done later to find out if your child has sensitivities to casein, gluten or other foods because the body retains antibodies up to two years. You may want to find a way to afford testing though since he is on other medications for epilepsy and you'd want to make sure a DAN doctor knew that and could offer appropriate medical feedback. BTW - Liam's pediatrician is willing to be 'educated' about the DAN movement but was very skeptical at first. I showed her his test reports and she became more supportive. Be prepared for this if you want to include your son's pediatrician in on anything you do with a DAN doctor. Because it is a relatively new approach to see autism in part as a neurological and medical condition, some doctors are quick to dismiss the newest research and stick more with the 'genetic and behavioral' description of autism or spectrum disorders they learned in med school.
I MUST SAY I noticed differences the first week Liam was on the diet.....his eye contact drastically improved. A few weeks later he brought a toy to me for the first time. Now four months later, he seems to keep growing in social development, eye contact, attention span and enjoyment. (I attend my first Son-rise Start-up here in a few days and can't wait!) He used to have a lot of stomach pain, loose stool and crying spells before the diet, but now I believe he just feels better overall. We have his first follow up appointment here in September, so additional tests may be necessary to see how his body is progressing.
Because Liam was so young it was easy to change his diet (that's why I jumped on it). He doesn't care that he and his sister eat different things (at least not yet!). There are many good websites and products available that I think your son would enjoy if you decide he'd benefit from the diet. Your other children might even like these products and actually if you just make things more from scratch (grandma's way) you avoid a lot of gluten anyway! I can give you my favorite websites if you would like at some point in time and tips I have learned along the way. Who knows, maybe if you get him tested he may have no need for the diet and you can have peace of mind knowing you are not leaving a stone unturned when it comes to helping your child. =) Hope this was helpful and not too overwhelming!
Blessings to you,
Autumn in OH, mom of Liam (22 months) and Mycah (3 1/2)