The main reason I've really thought it was necessary to do the ED is because my DD is very small - petite, shall we say. She doesn't look skinny or in any way malnourished (though, obviously, one can have issues that aren't obvious). She's what I would call "pleasantly plump" with creases/rolls in her thighs when she sits, enough tummy to squeeze/pinch, and an overall very proportional look - which is kind of funny given that on the CDC charts she's at 7th% for weight, 60th% for height, and her head is 75th%. On the WHO charts, her weight is just under 25th% and maintaining the curve pretty nicely. In fact, when the CDC chart showed her falling, the WHO chart showed her rising. (Which is just crazy, but I digress...)
So, she's small AND she has mucousy stools with occult blood. Sometimes, the stools irritate her skin. An irritating stool may make bleeding sores, but that's not very common.
And THAT'S IT. She's not fussy, she sleeps amazingly well, she is happy, developing entirely normally (very much like her brothers), she's active, talking, interested in solids (though we avoid them almost entirely because I'm worried about the sensitivity/gut issues)... She's NOT your typical allergy baby. She did have issues with congestion when she was younger but they've pretty well resolved. And sometimes I wonder if she (and my 3yo) have "allergy eyes." But there's nothing else of concern.
So I am going nuts trying to keep my diet "clean" and then realizing that the meal the waiter told me was clean actually had both soy and dairy in it and so she reacts... And we start over. And I'm constantly wondering if it's really worth it. I can get her "clear" frequently, and have challenged a few things on purpose (whether that was a good idea for my own sanity, or not, I'm not sure), to find that she does react to soft cheeses, cheese baked into bread, soy sauce, soy flour, etc. (Remarkably, some super-procesed soy/dairy items she does NOT seem to react to - but those are obviously not good for ME!) I feel like I've made progress but maintaining a clean/clear diet feels insurmountable. I realize that the more we eat at home, the easier it is, and we've been (unfortunately) eating out more than usual in the last couple of weeks. But, we do eat out every Sunday with a group after church... always Asian food. I LOVE Asian food and I do NOT love the soy-free main dishes at the place we always go to. If I have to keep with the DF/SF diet, I have decided I'll start eating just spring rolls with duck sauce... It's the only thing that seems at all yummy AND is clean. But I can't really not go eat with my family/friends every week.
So is it worth it? If she's totally happy, should I keep trying to avoid these things? Is it worth going nuts over? Should I just suck it up and do a food diary so I can better identify what might be causing issues when it does? (Like that sandwich that I was assured would be dairy free that came with a salad with a vinaigrette that had soy - and the bread had milk. ) Do I really have any hope of her outgrowing it, one way or another? If I could actually keep her gut free of dairy and soy for X amount of time, will it heal? Is there anything I can do to help it heal? (Slippery elm?)
Tonight, I felt like my brain would fry it I tried to think any more about what I could/should eat. DH (our main cook) insisted we needed to order something in. I finally decided to go for what sounded good, even if I knew some of it was "bad." I still ordered a salad with none of the soy-containing dressing (and thoroughly enjoyed it with a dressing from home), ate a flatbread that did end up with cheese on it (other than the goat cheese I ordered), but was AMAZING; and I got that piece of chocolate cake. 'Cause I just wanted a piece of chocolate cake!! So we'll see what happens to DD in the next 24-48 hours... And I may feel really awful. I really do have it ingrained in my head (and my little boys ask me about DF/SF all the time!) to stay on the ED, but it can be so hard. I am, at least, glad we're not having to avoid OTHER things!
So sorry to write a book... Please let me know if it's worth it and WHY. I need to have that in my head if I'm going to keep it up.