Well it's been five full days now, without any obvious discomfort, tummy aches, bowel trouble, decrease in appetite etc..
To me, it's now a success, and Hayden can have a non-restrictive diet again.
The reason we tried GF in the first place was to try to eliminate or reduce her reflux, as it was unknown at the time what the cause was. Since then, our direction has changed to investigating Hayden for Ehlers-Danlos syndrome, which fits with everything Hayden has go on medically since prenatal days. With EDS, reflux is often present due to the soft muscle and connective tissues being too lax to keep everything down. Also, a lot of her other issues, like dental problems, poor sleep, chronic fatigue, touchiness of mood, and tummy aches were blamed on her reflux... As I am finding out, it's likely more joint pain and muscle fatigue than reflux causing her problems. So in trialling her on a GF diet, I was thinking that we'd see less refluxing and less of the other issues that were thought to be caused by reflux. We didn't see much difference at all, if any. Her sleep got marginally better for a time but then worse again, and is apparently unrelated to her diet. Back on a gluten-laden diet she has slept remarkably well. This may be more to do with the fact that we've been giving her Tylenol at bedtime to help manage the joint/muscle pain. But there has been no adverse affect of the gluten being present in her diet. Not one iota different, except she's happier to be having some old favorite foods again.
She will be scoped again, but off meds to see how bad her reflux really is, and not for a year until we get a proper EDS diagnosis and have addressed her chronic pain/fatigue issues.
I cannot tell you how thrilled I am to be able to cook our meals together, to be able to eat out and not worry about where there might be foods that she can eat, or did i plan far enough ahead so that I have something she can have. I don't need to worry about cross-contamination in my kitchen or elsewhere, I don't have to shop at three different grocery stores. I don't have to feel so responsible every time she puts food in her mouth that I've missed something and given her gluten by mistake. She gets to be a normal kid at school (ok, not totally normal with EDS, but she'll get to participate will the other kids and not have me worrying about an impromptu cupcake that she can't have!)
I cannot tell you all how much I appreciate all the help and resources you've given me here. I am happy to be leaving this board, as much as I love you all for your supportiveness. I salute you, for dealing with food intolerances and allergies is exhausting and mind-boggling!! Thanks again for all your help, and if you're looking for me, I'll likely be on the health boards... Hayden has a million new consults coming up! Lol!
