So after Sam's diarrhea turned bloody indicating colitis, I pulled all dairy. His doctor said to let him heal for a couple weeks and then we'll talk about what to do next. I'm still upset that wheat didn't pass. I will try it again. But maybe soy will be next on the menu.
My Logan doctor, Sharon, said she thinks I should give him the eliminated foods once a week on a rotating schedule, every other day. So maybe one serving of wheat on Monday, soy on Wednesday, and dairy on Friday. She said she's seen it many times where people have eliminated a food for a long period of time, and then when they try to add it back, their body has a terrible reaction, worse than the reaction they were having when they initially eliminated that food. So if you add small amounts slowly, your body gets used to it and builds up an immunity to those proteins it wants to attack, kind of like getting the flu shot.
It completely makes sense to me. My only concern is, if this is a disease where genetically your body can't handle those food proteins, like celiacs with gluten, how will your body adjust and accept that food over time? Someone with Celiac would never be able to have gluten. They just can't. And what about these kids that have no safe foods, or only a handful? I know if they eat even a bite of a trigger food, they get extremely sick. I've heard some cases where kids have nerve damage from eating a bad food, including hearing loss. But maybe it would work in Sam's case because his is pretty mild? I don't know why it's so different. When I hear about all these other kids that have been tube fed for years and can eat nothing, with autism and so many other complications, it makes me think that maybe there are different conditions going on that haven't been properly diagnosed or even labeled yet, and they're all being lumped into eosinophilic categories. Kind of like before eosinophilic esophagitis was termed, all those severe cases were considered GERD or just reflux. The spectrum of symtoms and treatments is so huge, it seems like there's more going on than we've figured out so far.
My biggest fear is that Sam will eventually turn into one of those cases, where he can't eat a single food and has other complications, and I feel like what I do now will determine what happens in the future with this disease. I worry if I don't make the right decision it will be critical to his long term health. But the problem is, there is no "right" decision. No one can tell me "This works. Do this." It's such a frustrating disease!!
Well, I have another week to think about it. In the meantime, Sam was still being fussy after removing dairy, so I took him to the doctor to check his ears, which led to a breathing treatment and another round of steroids for his wheezing. He had lost almost a full pound, down to 22 lbs. Now he is much better, I'm sure heavier because he's been eating like a horse, and raging like nothing else when he gets mad, I'm hoping from the steroids so it will soon be wearing off. I found a new muffin recipe, too, that he has eaten better than anything else I've ever made for him gluten-free. He eats several a day and loves them! Again, it could be the steroids. But here's the recipe:
2 3/4 c safe flour blend (see my mix to the side)
1/2 c quinoa flakes
3 Tbsp baking powder
1/4 tsp xanthan gum
1/4 tsp salt
3/4 c sugar
2 Tbsp oil
1 c safe milk (I used rice and hemp)
3 mashed bananas
Mix all the ingredients, making sure not to overmix. Pour into greased muffin tins and bake 18-20 minutes.
The original recipe called for blueberries, coconut milk, and coconut oil; I don't know if Sam can have coconut, and blueberries are so messy when he eats them, so I opted to leave them out. But I'm sure it makes the muffin even more delicious!