Here's an email from Stacey that she sent to the family. Long story short, the Pill Cam showed nothing wrong. On one hand that's good news, on the other hand, Jonathan had the GI doctors stumped. This was the last major area to explore. Either there is something going on that can't be diagnosed or the issue is not a GI issue first and foremost:
As you all have heard, Jonathan doesn't have Crohn's but the IBD doctor said it is something we will still need to keep an eye on as he gets older because of the genetic markers that he carries (from the blood test we had done). The IBD doctor said that there were no significant signs of inflammation in Jonathan's GI tract from the pill cam test, so the doctors are perplexed as to why his fecal calprotectin tests (which measures inflammation in the GI tract) were so high both times he was tested while there are no major signs of it on the scopes. He's going to try & do more research on that and let us know if he finds any info.
Yesterday, I got a call from the GI nurse and they want to do a few more tests. Fortunately, they are only blood tests, so nothing too invasive.
1) They want to rule out SCID (short for Severe Combined Immunodeficiency) - you can Google it for more info
2) They want to rule out any carcinoid tumors - these can be cancerous and non-cancerous. These tumors can grow very small, so this is why they may not have shown up on any of the scopes we did (I asked about that). The blood test for this is called a tumor marker, so signs of any tumors would show up in blood work.
If both of these tests turn out normal, the next step would be to see the metabolic clinic in Denver. This can be a very long process to get into as the clinic is in high demand, so we have no idea at this point when that would be.
In the meantime, the GI doctor wants to start Jonathan on a zinc supplement which is supposed to help with gut health, then repeat the fecal calprotectin test in 2-4 months to see if there is any improvement.
That's it in a nutshell for now...