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Posted by on August 23, 2000 at 23:16:31:

Willy and his twin brother James were born happy and healthy, just under 3 years ago (2 years, 10 months). Both developed very well for the first year. Both were walking, and talking somewhat by their first birthday. Both switched from formula to cow's milk at around the same time and both were given the "standard" set of vaccinations.

Within about a month or so, James began to refuse to drink milk. From that time on, James pretty much only drank water and juice. Willy, on the other hand, seemed to love milk. He grew quickly and couldn't seem to get enough. He didn't eat much solid food but at times would drink 10 bottles a day. There were many times that he would drink 3 full 10 ounce bottles of milk when going to sleep for the night. In retrospect, we feel pretty bad about not doing something about it at the time but my wife and I were completely ignorant to any issues related to milk, dairy, gluten, etc.

James thrived in his second year, the doctor was impressed by his language skills. He told us to start saving now for Harvard because Jamie was so bright. Willy got lost that year. As the months passed he became more and more distant and off in his own world. He was always pleasant and easy to get along with, just give him a bottle and he would quietly lay on the floor and watch the ceiling fan or turn a car over and spin the wheels. We noticed that he stopped speaking and started to just grunt after a while and then stopped making noise all together. He was so withdrawn that when Jamie would hit him with a toy he wouldn't even respond unless it was extremely painful, even then Willy would just sit and cry.

The first hard clue that something was seriously wrong was when we got Willy a sand box and he started eating a fairly large quantity of sand. When his doctor heard that he was doing this, he immediately took blood and found that Willy was severely anemic. I jumped the the conclusion that he had lost his speech because of the severe anemia. We knew that something was causing his withdrawal.

After we took care of the anemia with iron supplements, the doctor told us to go and see the people at the Early Intervention Program. They did an analysis and told us that "Willy seemed to be PDD", we had no idea what it was all about but once we started to research it, the reality of the situation started to sink in.

Within a day or two of the analysis, the doctor told us to take Willy off of all dairy products. I think it was more difficult for me than it was for Willy. He had a couple of nights where he didn't go to sleep real well and seemed very agitated but it only took 3 or 4 nights to wean him from the bottle and all other dairy. We started to see big differences in his behavior, speech and eye contact within 3 or 4 days.

I stumbled across the GF/CF diet page and read the FAQs. It was an epiphany, this was all about what was happening to our little boy! It explained everything. I printed out and read the products list, the FAQs and most of the entries on the message board. Within two days, we had stocked up on appropriate foods from the health food and grocery stores and were ready to go gluten free too.

I know it is difficult for lots of people to implement the diet and every kid is different, but for us, it wasn't that difficult. My wife is home full time and even with our 4 other children, one being a 4 month old baby girl, we were able to do the diet for the past month, with only one minor slip up.

Willy has been improving steadily. He is has also been in OT and speech therapy during that period but we KNOW his progress is almost all because of the diet. He now plays with cars right side up. He said two more new words just this morning before I came to work. He sat on the swing and let my wife push him yesterday for the first time, as opposed to him laying on the swing and spinning around and around. He now grabs our faces and gives us kisses. He hits his brother back. He points at things. He babbles happily. He is a completely different child. All this, in only a month. He has been saved.

So for all of this, we want to express our sincerest thanks to our doctor, all of the parents and interested people who participate in the GF/CF message board, those who maintain and sponsor this page and pages like it, and all the doctors and researchers that are willing to question the conventional wisdom. We would especially like to thank Lisa Lewis and Karyn Seroussi for sharing their experiences, knowledge and inspiration through their books and for establishing ANDI and leading us here. We would not have been able to do it without those who have come before us and broken the hard ground.

Thank you all.

Willy's Story (sent 8/12/00 to website) age 2 yrs. 10 months by Bill Stewart

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