I’ve decided the best thing to do is to view this all as an experiment.
It’s been about 5 months I’ve been off dairy, 3 months off eggs and soy, 2 months off gluten, I lost count about when I quit eating berries. With these changes, each step of the way I had to quit eating something that I was used to. With the dairy eating out became more limited, but I could read labels, ask the correct questions, and be careful.
For instance, people tell you there is no dairy in something but you have to ask is there margarine, b/c margarine has dairy too.
Foretunately, we already didn’t eat many packaged foods, or so we thought, so that’s made some of the changes easier. Now I’ve gone overboard buying the “gluten-free” packaged things, possibly to Ada’s detriment.
The eggs and soy affected a few things… baking and eating sushi.
Gluten affected everything. Practically no eating out. I do eat at some local Indian, Thai and Turkish places. I know the owners and they’ve been great about working with us. Even then, I may be getting some traces of foods that I shouldn’t.
So. Where does this leave me. Ada is still rashy all the time. True, her other symptoms– inability to sleep/nap well (probably because of pain) and some clear signs of an unhealthy digestive tract, are mostly gone. So my pediatrician says not to worry about the constant diaper rash too much, because as long as the unhealthy GI tract signs are gone, there is less internal damage going on in her colon, which is super important.
So it’s great that that is fixed but it’s not good enough for me.
A symptom is a symptom. She is rashy all across her diaper area all the time. A reaction to a food is a reaction to a food. And maybe it’s not enough to cause the other GI symptoms, but it is still a sign that there is some internal distress.
I have two ways to look at it:
1 – She is a super-sensitive celiac/gluten intolerant and trace amounts of gluten are enough to cause the smaller rahses but not worse symptoms.
2 – There is something else she is reacting to, perhaps nightshades (tomatoes, potatoes, eggplant, peppers) or citrus.
There is a little bit of a debate, or at least, some varying viewpoints on this “super sensitive” celiac stuff. I know a community of celiacs who test products that should be, or that you would think are, gluten free, like spices, rice milk, gluten-free grains and products and even strawberries.
And they find gluten on them. Some of it has to do with how grains are handled… they are ground in the same place with wheat or a gluten grain, and there is some cross contamination.
With the strawberries, some fruits are coated with a wax that has wheat in it.
So on the one hand, many celiacs can tolerate these trace amounts and are fine, or at least they damage being done is minimal or hard to see.
And on the other hand, many celiacs are plagued by gluten symptoms from these small amounts adding up.
And some say that when the trace gluten is out of their system, they can eat tomatoes or strawberries or whatever it is again.
So I’m going to pretend for a moment that Ada is supersensitive. I’m giving away my spices. I’m getting new ones from a brand that tests gluten free. I’m getting rid of my wooden spoons. I’m buying a brand of rice that tests gluten free, eventhough theoretically, all rice should be fine. But for cross contamination.
It’s interesting, because Ada always seems to break out after we eat at my mother-in-laws’ house, though she has tried hard to be careful for us.
And then someone tells me that the brand of rice they were using tested positive for gluten, and guess which brand of rice MIL is using? Same one, of course.
I’m going to stop buying the packaged gluten free cookies and breads. I’ll make it from scratch from brands that other super sensitive celiacs have had good luck with.
Maybe I won’t even eat ANY grains for the next three weeks. This morning instead of my toast and jam, I had a sweet potato with butter and honey, something we used to do when I was little.
Let’s look at like an experiment… can I do it? Can I be largely grain free for three weeks and see if Ada improves? And if not, what can I use instead of tomatoes and potatoes that I love so much? I’ll find out. And eventually Ada will be better for it!!
I’ll ignore my cravings and find new, different, and possibly healthier things to fill me up.