Hey, I'm really sorry to bother you and I hope I'm not out of line but I just read your newest post about your stomach and I'm curious... Do you have any idea what's wrong? See, I've got something similar and for the last year and a half I've been living on rice, chicken and the few veggies that don't make me sick. I've lost a third of my original weight, but all the doctors I've gone too have no idea what's wrong! Which is why I'm asking. I hope I'm not out of line and I wish you the best day!!
Not a damn clue. My diagnosis currently ranges from “you’re overweight try losing weight” (no longer valid since I dropped fucking 20lbs in a month and likely wasn’t valid for most of my symptoms to begin with) it’s “just” IBS (a chronic condition unto itself which too few people including doctors seem to realize and dismiss as non life impacting simply because it’s “common”) leaky gut caused by allergies (previously thought to be celiac but repeatedly tested negative for) chronic GERD (somewhat more under control than it was to the point when I am off my meds which worsened the other symptoms) vocal chord dysfunction (previously misdiagnosed as asthma which before that was misdiagnosed as purely anxiety when in fact the reason I was panicking was because I couldn’t breathe) “it’s just anxiety” (which yes I have anxiety, but I’ve realized a LOT of it was being caused by allergies causing a near constant adrenaline response so that was fun. Nice to know I was on sedatives as a teenager because no one bothered to listen to me when I said eating XYZ hurt), hormonal problems (despite my hormones always being “normal”), and last but not least “I mean, it could be fibromyalgia or an autoimmune disease, your symptoms are kind of hard to pin down”. That latter part being a direct quote from a doctor.
I’ve also had severe issues with my teeth, which since I have switched to a holistic dentist, have largely been resolved. (Still in pain, but every time he does something my health bounces up a notch so it’s a process I’ll be working with him toward fixing over the next few years. He even suspects I might have been getting mercury poisoning from some seriously dangerously over the limit leaking amalgam fillings I got in my early teens. He’s also the only dentist willing to remove my root canal teeth because they’ve never fully healed.)
So. Yea. I have some of my own possible theories that it might be SIBO which many doctors here in the US seem reluctant to even admit is a real thing (my current dr certainly doesn’t and will not test for it despite it being an easy culture test to do) and some possible genetic fuckery/immune system bullshit. Both my parents are extremely ill people with very similar issues, my dad even has an autoimmune disease he doesn’t care enough to even remember the name of so I can’t just narrow the field and test directly for that. Thanks dad.
The difference between me and them is I am actively trying to get a diagnosis and claw some semblance of health/sanity back before I turn into a hermit resigned to dying young.
A big thing for me seems to be allergies/intolerances which have sprung up in the last few years. (Rice is the first thing doctors recommend for eating “plain” food but it’s actually a huge trigger food for a LOT of people) Eating only organic seems to have helped (suggesting a preservative allergy, which my allergist just kind of said “I believe you, but there’s no reliable test for it so just…don’t eat them”)
Which is where you find me at now, two years down the rabbit hole of trying to get an accurate diagnosis. As for asking questions, it’s entirely okay to ask questions. I’ve pretty much wound up documenting my chronic health issues because a) it was helping me to keep track of things and then b) my blog got popular due to shenanigans and then a bunch of other people started going “HEY ME TOO” and we’ve created a sort of exhausted support group for each other and also c) the number of people who message me on a daily basis to tell me it helps them to know they are not alone is just…I’ve cried twice today at some of the messages I’ve gotten, and at the time of typing this it’s not even noon.
I do not mind being public with any of this because gods help me if someone can figure out some small puzzle piece of their life from me falling apart then in some small way it will be worth it. Cause I know what that feeling is like. And I wouldn’t wish it on anyone. Chronic health issues are so incredibly isolating.
So yea…next step I’m off to see a natruopathic/functional medicine doctor (yes I made sure they are licensed physicians and not just crazy hippies) in the hopes that she might have some answers for me, or is at least willing to listen to me, which uh, yeah, the more you refuse to accept suffering to be your way of life, many doctor’s don’t seem to appreciate. I had my GI doctor tell me I shouldn’t google my symptoms and just accept the fact that the meds he prescribed for the chronic GERD would dissolve my intestines which, hahahahah, ha. No. I do not accept that. Not even a little bit.