Yesterday we went in to see a new GI. Even though we had a bad experience with Ellie's first gastroenterologist (who told me the reason Ellie was failing to thrive was because I was nursing her and if I would only feed her formula our problems would go away), I managed to work up some optimism that a new GI would be able to give us some answers.
Not so much.
While the new GI seemed like a great guy and was very positive about everything we've done to help Ellie so far, we did not leave feeling any clearer on what is going on. After we left, Ian said, "so, what did you think?" to which I replied, "I think I know more than that guy does!"
We focused a lot on pancreatic insufficiency since Ellie is having such a hard time digesting fats. The GI explained what diseases could cause Ellie's pancreas to not function appropriately. The GI talked about cystic fibrosis and some rare disease called Schwapman-Diamond Syndrome but after going into each at great length he said Ellie obviously didn't have either of these conditions because she doesn't have any of the other symptoms that go along with those diseases. Argh! He also talked about Celiac disease - which was interesting because I didn't know Celiac can cause difficulty digesting fats. But he said since we've been grain-free for 9 months - if Ellie did have Celiac - symptoms would be gone by now. He also said that her endoscopy when she was 13 months old would have picked up Celiac. I have heard otherwise - that Celiac is often not caught by endoscopy at such a young age when a kiddo has only been expose to gluten for a few short months. I'm not convinced she doesn't have Celiac and will definitely encourage her to stay gluten-free for life, as I now plan to.
Anyway, the appointment ended with the GI essentially saying. "I don't know! I can't tell you what is causing your daughter's symptoms. She may always be a mystery. But I doubt she will have these problems lifelong. Someday she'll be 10 years old and you'll say to each other, 'Gosh remember how Ellie had such a hard time with food her first couple of years?'" I love how doctors who have no idea what is going on with my daughter medically feel totally comfortable declaring that she'll outgrow her problems (which they don't understand) in no time. People have been telling me that since she was a couple months old.
The one piece of actionable information the GI gave us was that there is a stool test we could do to confirm that fat absorption is Ellie's key problem right now. Apparently the average person absorbs 92% of the fat in their diet, leaving 8% which passes through in their stool. So we could do a test that measures how much fat is in Ellie's stool and then compare that to a food journal, have our nutritionist carefully calculate how much fat Ellie ate in those days and see what percent fat she is not digesting. I'm up in the air about whether this would be a useful piece of information, or whether it's just adding noise to a process we're already fairly confident is working.
What I was really hoping for from the appointment was that a medical doctor would be able to tell me why my daughter can only eat 28 foods and why when she eats foods high in fat she experiences terrible stomach cramps and pain in her belly. But I see now that likely no one will ever be able to answer that question definitively. So we will carry on with our diet - which is working - and our supplements, which have been hugely helpful.
We are just coming off an intense couple of weeks where we focused on introducing bovine bile salts and additional lactobacillus. Both additions caused intense, unpleasant, symptoms like diarrhea, tummy aches, reflux and lots of night wakings. But after a while Ellie adapted to both of them and now she seems to be thriving with those additions. We are doing so well, actually, that we plan to trial lentils this weekend. Yay! Keeping my fingers crossed that it goes well.