5 ms·

I’m feeling this way too hard. I have a condition where any food I consistently eat I become sensitized to and begin developing severe reactions that are alike

I’m feeling this way too hard. I have a condition where any food I consistently eat I become sensitized to and begin developing severe reactions that are alike anaphylaxis in nearly every way but not quite as severe. I have been hospitalized several times now with starvation issues. Yeah immune suppressants sorta worked but you can’t exactly stop a full on immune response so it just bought a little bir of time. (1) mast cell testing - negative (2) ige testing - mostly negative but i also avoid things i react to (3) endoscopy - mostly negative but some inflammation (4) psychological - medications didnt do anything (5) Non-allopathic stool testing from Genova Diagnostcs? astronomically high secretory IgA levels, high zonulin levels, disturbed gut flora populations and altered stool enzyme levels. -> point this out to doctors “sorry cant help ya there. _that’s unvalidated_” Me - well fucking figure out something to try then!!!! Dead end. I am so sick of evidence based medicine.

LorenPechtel 5y ago
At least I don't go down the anaphylaxis route. Unless the picture changes I won't have starvation issues, malnutrition is definitely an issue. I'm sure it's going to end up having to go with immune suppression (and I have every reason to suspect that's only going to be a temporary solution) but so far I've been able to avoid that. Never tried the psych stuff. One doctor suggested it but it felt very much like they were pretending it had off-label relevance--but he ignored my saying capsules, not tablets. Sorry, you're not thinking about it and I'm not taking psych stuff without the doctors considering it carefully. And tablets that can't be cold-turkeied are a hard no for me. (I'm going to go sensitive to the tablet binder at some point. If I go sensitive to a capsule I can at least break it open.) Nobody's suggested the stool testing, is that something new? I'm pretty sure gut flora play a role but I don't have details. (E-mail in my profile.)
- Madmallard 5y ago
  GDX stool testing was something recommended by an integrative dual resident at ucsd for me. I think if you disturb the flora and lining too badly the normal tolerance mechanism with Tregs breaks down. That’s my theory anyway.
  - Madmallard 5y ago
    I also had no issue starting and stopping low dose benzos

LorenPechtel 5y ago

At least I don't go down the anaphylaxis route. Unless the picture changes I won't have starvation issues, malnutrition is definitely an issue. I'm sure it's going to end up having to go with immune suppression (and I have every reason to suspect that's only going to be a temporary solution) but so far I've been able to avoid that. Never tried the psych stuff. One doctor suggested it but it felt very much like they were pretending it had off-label relevance--but he ignored my saying capsules, not tablets. Sorry, you're not thinking about it and I'm not taking psych stuff without the doctors considering it carefully. And tablets that can't be cold-turkeied are a hard no for me. (I'm going to go sensitive to the tablet binder at some point. If I go sensitive to a capsule I can at least break it open.) Nobody's suggested the stool testing, is that something new? I'm pretty sure gut flora play a role but I don't have details. (E-mail in my profile.)

Madmallard 5y ago
GDX stool testing was something recommended by an integrative dual resident at ucsd for me. I think if you disturb the flora and lining too badly the normal tolerance mechanism with Tregs breaks down. That’s my theory anyway.
- Madmallard 5y ago
  I also had no issue starting and stopping low dose benzos