I’ve hit the end of the road with my allergies, apparently. I went to my ENT/allergist on June 2nd, to follow-up about what the specialist immunologist/allergist had to say. Sadly, the super specialist just wanted to focus on my eosinophilic esophagitis (EoE) and didn’t care about the reason I was actually there: I would massively overreact to every allergy shot I got at doses most people don’t ever react to (even anaphylactic people). Even though they want me to come back, I will not be returning to the super-specialist because my EoE is being managed by my gastroenterologist and my ENT/allergist is more concerned with my allergies than them.
Dr R, my ENT/allergist, told me that he believes I have a mast cell problem. He doesn’t know enough about what MCAS is to diagnose that specifically, and my normal tryptase made the super specialist adamant that my mast cells were fine. Thankfully, Dr R knows that I can have a normal tryptase and still have mast cell problems. He believes mine are very specific episodes where the mast cells get triggered and then way overreact. Thankfully, they have never caused an anaphylactic reaction for me!
I also mentioned the possibility of eosinophilia of my skin, but a milder case. He agreed with me completely! The super specialist told me that I couldn’t have skin eosinophilia because it was always visible, but that didn’t match with my research. Hypereosinophilia causes visible rashes (or other visible signs) at all times, and requires your blood levels to be 1500 eosinophils or higher for an extended period; I do not fit those requirements. However, I did stumble across research (I cannot re-find the link, how aggravating) that suggested it is possible to have eosinophilia of tissues that is only apparent under certain circumstances. To me, this was obvious because my EoE will almost completely disappear for large periods of time, then it flares back up. If I touch something I’m allergic to, like grass or dust, the part of me that touched it will swell up, get red and hot, experience pain, and get what appears to be a rash under the skin. If I eat something that triggers my EoE, my esophagus gets swollen and painful (and I’m assuming red from irritation). To me, the two experiences feel almost identical. Thankfully, after explaining this to Dr R, he agreed and does seem to believe I may have eosinophilia in my skin. I don’t think he officially diagnosed it (it would require biopsies, probably a lot of them), but at least I have a doctor that agrees with me!
Thankfully, I now feel validated in that I got a doctor to confirm that I likely have mast cell degranulation episodes and eosinophilia of the skin!
Sadly, this appointment also had heartache involved. Obviously, my allergy shots were a horrible failure (you can see pictures in this post). I cannot use Flonase, as it causes massive migraines almost immediately after using it. I cannot use Azelastine, as it irritates my EoE horribly. Zyrtec doesn’t do anything for me, and Allegra also causes massive migraines. The super specialist put me on DoxePin, and it made me very ill and foggy. Currently, I take Singulair, Xyzal, Nasacort, Zantac, and Claritin (we add the Claritin during my worst allergy seasons) daily. The Zantac helps my EoE, specifically, but I did notice a slight improvements in my other allergy symptoms when I started it. I also use two different types of ear drops (depending on my needs) specifically to treat eczema in my ear canals, and allergy eye drops (Alaway) to treat my itchy and bumpy eyeballs.
My gastroenterologist is thinking of adding a special slurry medication for my EoE, but we seem to have run out of other treatments for my other allergy problems. I take Benadryl as needed, and I’m just glad that it doesn’t make me sleepy, and use Benadryl cream or hydrocortisone cream when I have a topical reaction.
We have been trying to do a better job of keeping the house cleaner, but it’s quite difficult. Our house is right on two of the busiest streets in town, and just two blocks from a freeway, so we get a lot more dust than average. We also do not have central air, so opening the windows in the evening and at night is the fastest and easiest way to cool the house, meaning dust and pollen come right on in. Having two cats, when I’m allergic to cats, is also not that great for keeping things dust free, but they’re at least not allowed in the bedroom! (They’re my kitties and I love them to pieces!)
I’m hoping that maybe things will improve eventually, and that new treatments will become available for me to try! Essential oils will probably also help, I just need to spend more time researching it!