|Cute photo of Leni just because she's way more fun to talk |
about than GI testing fails =)
The next test results to come back were from a breath test that was looking for small intestine bacterial overgrowth. This tests for the activation of H2 and CH4 in the intestines after stimulating them with a high sugar drink to see if there is an accumulation of bad bacteria that may be causing chronic intestinal issues. Other than having a minor reaction to the coloring dye in the drink and getting extremely nausea before the end of the test, this was relatively okay as testing goes. During the test, the nurse told me what values we were looking for to qualify for a positive test. Despite having fairly high baseline values, it was clear that I was not going to hit the mark to have a positive SIBO test. At least we figured one test was definitive...until a couple weeks later when the test was "interpreted" and became just as ambiguous as the others...Turns out there are values that are considered positive even at baseline without requiring an increase after drinking. Both of my baseline values were just over that line...but after drinking dropped to non-diagnostic levels...so now what do we make of that??
|The oh-so-wonderfully artificially flavored drink to test for SIBO|
I spoke to my GI on the phone about a week and a half after the scopes once the biopsy results had come back. The biopsies didn't show anything that he hadn't seen during the scopes, but we were able to rule out Crohn's (for about the 3rd time) and Celiac (#7 or 8) again and confirm there were no other infections or disease processes. Basically we have not much more info than we did before the testing, but we have more definitive answers on what is NOT going on, so I guess that is good at least. My symptoms are pointing more toward a secretory mechanism for my gut hyperactivity despite not having tests results showing that definitively. We have pretty much exhausted all the possible structural issues or primary GI diseases, so we're down to secretory problems and just mast cell driven GI issues.
|Older photo, but still so familiar...|
The past 6 months have been a holding pattern of hoping we'll get a breakthrough with my gut issues so we can start trying new mast cell medications. At this point, I have tried many of the oral mast cell medications already. There are a few left to try, but doing so with my intestines not absorbing would be pointless. We won't know if it's the medication actually not working or my body not even absorbing it if we add anything new in right now. We don't want to start any IV treatment options because they are VERY difficult to get off of once they are started. So we've been waiting for all this GI testing and hoping we would get some answers. But now that we're on the other side of all this testing with not much to go on, we're looking at the reality that my symptoms could be entirely mast cell driven and only presenting in the gut but not actually an intestinal problem.
With that being the case, we are running out of options. We may be forced to try some IV therapies to get my body more stable. Once my GI tract has calmed down, we can add in some oral mast cell medications, and then hope I am able to transition back off of the IV treatment. Not our first choice by any stretch, but at what point do we no longer have a choice? Obviously we want to get me more medically stable, but at what cost? When do we decide to risk potentially being stuck on IV medications long term in an attempt to prevent long term damage from relentless symptoms? I think these questions are some of the most difficult to answer when living with a chronic, rare disease.
I'm heading out to MN again next week to follow-up with my mast cell specialist and this will be one of the big things we will be discussing. I see my GI again a few weeks later and my allergist also before the end of June, so hopefully we'll have a plan of action in the coming weeks. Maybe it's not what we want or hope, but even still, I am so incredibly thankful to have a team of doctors willing to help figure things out. It still wasn't that long ago when I was still fighting to be heard in the medical community that something was actually wrong. Two and a half years after being diagnosed with mast cell disease and I am so thankful to have a local allergist, mast cell specialist, neurologist, endocrinologist, GI surgeon, and 2 other GI doctors all working to help me figure things out. Too bad that sometimes there just isn't anything anyone can do...