wow, very helpful thread guys. This has always been one of my fears as well with needing nutrition from a tube but not being able to tolerate it....sigh.... may I ask how long you did the water, sugar and salt for? That is intense.
@sunshine44 If anything that I have written is useful for you, it literally makes my day and is one of the reasons that I keep writing about MCAS. Is MCAS one of your primary diagnoses? Do you have an EpiPen?
My first anaphylaxis episode was in early 2015 to a yellow food dye in a candy (Tartrazine) which was absolutely out of the blue and was terrifying. We did not identify the trigger until much later in the day. I am happy to share as much of the story w/you as is helpful but I went from being allergic to yellow dye, to red dye (in a medication) to all FD&C food dyes, to certain foods, to all food. Luckily I was never allergic to water (which actually happens to some people) but thank God, did not happen to me.
There are many parts of that time period that are literally a blur to me and I am not sure that I will ever get the full memories back b/c I was so malnourished. I believe I was drinking the water with dextrose powder and salt for several weeks and I was hospitalized for a week in May 2015. My main doctor tried everything he could think of and consulted with Dr. Afrin (#1 MCAS specialist probably in the world) who told him that I needed IV Benadryl 30 min prior to eating.
I was able to try this in the hospital and then we switched to IM Benadryl injections when I went home. I ultimately developed a toxicity reaction to the Benadryl and had to stop it so I couldn't eat food again (and drank the dextrose/salt water again) until I finally got an appt with my MCAS specialist in July 2015 (and he is still my doctor today). He immediately put me on Ketotifen and Atarax which were life changing. I was taking 7-8 meds & supplements at that time in order to eat 4-5 foods (lamb, rice, sweet potatoes) and then was able to add butter, cooked apple without skin, blueberries, plain oatmeal, and maybe a few others?
I started following the SIGHI diet (very low histamine) and my MCAS doctor stopped the meds that were making me worse like Gastrocrom. I found very helpful supplements like Quercetin, NeuroProtek, Daosin plus OTC meds like Zyrtec and Pepsid. I literally tried everything but what put my MCAS into remission was IVIG. I still cannot explain the mechanism but the IVIG put it into remission in 2016 and it has never returned. My MCAS doctor thinks that the IVIG somehow "re-set" my immune system away from the insane allergic reactions. I still avoid the foods that I was allergic to life-long in addition to all FD&C food dyes, and all contrast dyes.
Even my super-allergic dog is tolerating lamb
