It's taken me awhile to get around to posting this because we have been so busy, but the results from Lu's last biopsy came back just before the 4th of July weekend and we were thrilled to get the all clear on her throat. No Eosinophilic clusters in her esophagus at all, which means that whatever it is that has been causing the reaction in her is one or more of the foods we have eliminated from her diet. Which means that this condition can be managed by managing her diet. Yay! A big step in the right direction.
The Next Step: so now the next step is the trial and error of adding back one food at a time and testing her after each addition. We are starting with Soy. The reason is that adding soy back into her diet opens up so many gluten free/dairy free foods that have been off limits so far. We toyed with adding back one of the big guns: wheat or dairy, but the truth is that those are the most likely culprits and the idea of giving her back some of her very favorite foods in the world only to take them away again 90 days later sounds pretty terrible. We still aren't able to adequately explain any of this to her and without explanation it just seems cruel and so hard for us all. She has become so determined and so sneaky lately. So good at finding ways to get her own way. Right now she is somewhat content without the things that have gone from her diet. She asks for some of them now and then, but it's not too bad.
So we'll add soy back first. It makes a difference to her diet, but not such a drastic one. She can have miso and tofu again. She can have soy ice creams and rice dream. She can have a few more kinds of dark chocolate that had soy lechtin in them. There are a few kinds of cookies and crackery things she can have. We'll try it for 90 days and schedule the next endoscopy to test her again. If this goes well we'll add nuts back next. And then probably eggs and see where we are. We'll keep trying and hoping.
And now off to bed.