Eosinophillic esophagitis and gatritis - Horrendous esophagus spasms

I am female, 44, 5'11ft, 165, (I was 189 with no health probblems and strong and active when this all started) I have Eosinophillic esophagitis and gatritis. It started from high eosinophilic white blood cell count (mine 17,000 to 21,000) These white blood cells go directly to the esophogus and stomach. (varies with people who have this disorder) Gallbladder and pancreas came out healthy on all tests.

These white bloods cells think they are there to help with an allergy but alas I have no allergies that they can find. It causes such bad irritation that sores/ulcers or a rash develops through out the lining of my stomach and esophagus. Causes that searing burning pain about where the stomach connects with the esophagus. Double over drop to my knees pain. The ulcers from the EE can trigger gallbaladder and pancreas problems. Biopsy confirmed the eosinophils where embedded in my esophaogus. They dialated my esophogus during the biopsy which set off spasms that continue regularly til this day. (Been 3 years) The spasms are stunningly painful and ruin the entire day/eve and sometimes through the next day...happening right now. Gone to ER before and they give benedryl and predisone...doesn't help. It's embarrassing too..the spasms go all the way up into my neck causing thick clear mucus to come up and I have to spit and pull it out of my throat.



All they could do was prescribe steroids, omeperazole and elimination diets. I almost starved to death from that one. went down to 145, I gained 15 back. It can be environmental allergies too...(Things you breathe in) or it can be totally autoammune....of which most doctors dont say that as most don't know much about this illness. It usually attacks children. Recently they are finding many more adults with it. The steroids was a temp fix for clearing up the rash/sores...but who wants to be on steroids permanently? The side affects from those are bad too. It doesnt stop the other symptoms and problems.


I have noticed that oily or greasy foods and yeasty/gluten foods trigger it. I feel so much better when all I eat are naturally low to non fat natural foods...no sucralose or fake sugars... just fruits, veggies, nuts, corn, corn tortillas, fresh natural meats, unprocessed foods.. natural cheeses, plain nonfat natural yogurt with fresh fruit that I add and natural honey. Oats (raw cut), eggs, wine ok.. no beers (full of glutten, yeast, wheat etc) Every single time I think i feel great... a beer and regular hamburger bun would be good with deep fried french fries once will be ok..... then I get an entire night and next day with esophogus spasms, belly pain and a severe headache. Excercise before and after seems to help a lot too. (The pain is too much to excercise through it) (I carry Tums..they work way more than omeperazole)

It'll take a couple days for my body to detox from what I ate yesterday. Sorry about this long book...but I thought it might help someone out there. The fight I had to go through to get diagnosed and treated was rediculous..treated by some like I was imagining it or it was anxiety. I've learned so much. I created a support page on facebook. So many have this or similiar issues. Press on and take your health care into your own hands. Doctors are awesome in general and have a wealth of knowledge but they are human and there is so much that they may not know...life is a learning curve.

Are you sure it is not acid reflux causing the increase in Eosinophils in your esophagus?  They are starting to find that reflux can cause BOTH low and high level of eosinophils in the esophagus.  I feel for you as I know how painful this can be!  Perhaps you could try swallowed Flovent for 2 weeks out of a month or something?

Ok, so you had a dual PH probe done?  They told me I had EoE, but when I had the PH and then Bravo, my DeMeester score was in the 20's, even while on Zegerid.....they cannot find allergies on me either, outside of seasonal which I take Quercitin for, and that has literally been a life-changer for me.

Could you message me the link for the facebook page. I would be interested. I had some spots in my last ent that looked like eosinophilic esophagitis

you could try magnesium, that has helped me and others