Posted 10/20/2019 10:55 AM (GMT -5)
about a month ago, I got sudden diarrhea for a few days, which is very unusual for me. Ever since (not before or during) I have had rumbling belly (not gas) and intense upper abdominal pain, especially about two hours after I eat. There's some constant discomfort lower down the GI tract which is milder but feels like inflammation and frankly is hard to distinguish from the constant uterine cramps I experience. No fever, no blood in stool, no reflux, still have an appetite most of the time. I feel best at night and in the morning, when my stomach is empty. This summer I felt better than ever since I got sick with Lyme, and that hasn't changed aside from the GI stuff, so this doesn't feel like a Lyme flare, but I guess Lyme can do whatever it wants.... I have kept my diet very limited during this time, so I know that what I eat does not seem to affect the intensity of the cramping (i.e. cauliflower, bananas, coconut milk, and rice noodles hurt equally). The initial diarrhea occurred right before my period, and recurred for just one day when I ovulated.
I just moved, so I'm getting various new doctors up to speed, which as all of you probably know is no easy feat. I have convinced them to test me for a few things so far:
CMP: normal
CBC: eosinophils very high (previously always on the low end, along with all other white blood cells)
(Eosinophils are a type of white blood cell that primarily are associated with allergies, Crohn's, and parasites.)
Ultrasound: abnormal uterus enlargement, all other abdominal organs normal (stomach and intestines not included, as ultrasound not diagnostic for organs with air inside of them)
Parasites (mainstream stool test): negative
Six common bacterial infections in stool: negative
Amylase and lipase: normal
Physical exam: normal aside from rumbly belly
My new integrative practitioner (very Lyme-focused) is testing me for a great many other things and doing a comprehensive stool analysis, but results will take weeks. I don't want to deal with invasive tests and contrast media unless I have to, so let me know if there are any non-invasive or blood-based tests you would recommend.
The current theories are:
Mast cell activation syndrome - I was diagnosed with this clinically about eight months ago, and a low-histamine diet and quercetin have made it much better. It would explain the high eosinophils. But I'm only having the GI symptoms right now and no brain fog, which usually is my biggest MCAS symptom. And I'm not being exposed to anything I know to be a trigger. (The new house has been remediated for mold and re-tested, all new furniture, windows closed, air purifiers, have not left the house in a month, etc. Really doesn't seem likely to be mold!)
Crohn's disease - Also associated with high eosinophils, and consistent with my GI symptoms. And we know Lyme predisposes us to autoimmune conditions. That said, I have no other risk factors aside from being white.
Endometriosis - The eosinophil connection is still being studied, as is endometriosis's relationship to autoimmunity, but it's something I've been suspected of having for years and of which I have all the symptoms. (Technically the only way to have an official diagnosis is with surgery.)
Parasites - Plenty of parasites don't appear on standard doctor's office tests, so it's possible even after the negative stool tests. This is, disturbingly, my favorite option. It also might explain the sudden onset, recurrence a few weeks later, rumbling, and high eosinophils.
Eosinophilic gastroenteritis - This is when you have gastroenteritis because of high eosinophils in your gut, and is treated with steroids but seems to be very poorly understood. To me it sounds related to MCAS or an offensive chronic pathogen that isn't easily testable.
Has anyone had high eosinophils and GI issues that both were caused by Lyme or co-infections? This would be the easiest explanation - seems like most things can be caused by Lyme! - but the eosinophil numbers are throwing me for a loop.
Thank you to anyone who has read this far. Let me know if you have any thoughts, ideas, or similar experiences!