We heard from the doctor regarding the results of Em’s endoscopy, 2 weeks to the day after her procedure, just like he said.
Everything came back normal except one biopsy – her lactase level is severely low – the low end of the range is 15 and hers is 1.1. Which just means that she is (officially, I guess?) lactose intolerant. Which we already more or less knew, because dairy definitely is a problem for her. His suggestion was to use Lactaid. We can follow up if her swallowing issues continue…
That is all well and good, but I just don’t see how that addresses the very real issues she is having. I mean, yes, we have known for quite a while that she is lactose intolerant. She copes by avoiding/limiting her dairy intake. This is just not a huge, big deal for her. It certainly isn’t the core of her symptoms and it really isn’t news.
What is a huge, big deal is the poor motility, poor appetite, constant nausea, early satiety and food intolerances. Both Abonia and Croffie are focusing on the swallowing issues, which again, are not the biggest problem. I am very aware that her issues are not at all as serious as those faced by some EDSers. The constipation has been controlled by religious use of Miralax, she has gained a little weight back and is able to take in enough daily calories to maintain. I am enormously grateful that she is holding her own and not getting worse at the moment.
But, even the endoscopy itself has set her back. She is struggling with abdominal pain, nausea, poor appetite, early satiety to the point of probably losing weight again instead of maintaining. It takes so little to throw her back into that cycle, although she is never out of it – it just ebbs and flows. I know that there are many others who are more seriously ill but, I would really like to prevent her from getting even worse, if at all possible. I thought that is why we were seeing a motility specialist.
So, I am feeling a little confused and adrift… I get the impression (I didn’t talk to the Doctor, my husband did) that he doesn’t really need to see Em again, but will if we want.
I am also pondering the why of such a severely low lactase level. Is something causing it? I know that lactose intolerance in and of itself is not a big deal and I am not concerned about it exactly, but, I just have a sneaking suspicion that there is something else going on here. If her level was just low, I probably wouldn’t think twice about it, but she is severely low and that is a red flag to me. After a quick internet search, which was pretty fruitless, I did find a couple little nuggets that make me wonder more…But, I am left with half formed theories revolving around mast cell activation that probably couldn’t be proven anyway.
I guess we wait and go to the appointment with Abonia next week and see what he says. I doubt that he will be convinced that EoE is off the table, but I would love it if he would at least be willing to address the issue of mast cell disease now. Then we need to figure out our next step with GI. I think it is clear we need to follow up and do further testing. I don’t see any other option but to push Croffie to investigate further – we need him to order the tests so insurance will pay for it. Ultimately, maybe we could get back with Garza at Cincinnati Children’s but I just don’t think that is an option right now.
This is my least favorite part of this process: back to square one, knowing exactly what the problem is but not having anyone who will slap a label on it, and having to be the one to push for answers from people who should be finding them for me.