Esophagitis Help!

Hi everyone,
I'm new here and am struggling with esophagitis for the first time. I'm 49 and have some very minor GERD, but mostly LPR symptoms. In June, I went to the doc with sore throat/burping and she put me on a PPI. Fast forward to August, I was no better and still in pain. Come September, I was scheduled for a scope, and a week before the procedure I had a spasm (felt like it was in the upper part of my esophagus, not chest) and my throat cinched up. I couldn't eat and it got worse over the following days until I was barely taking liquids.
The doc found inflammation (she said it was mild/moderate, grade A/B) and a possible candida infection (unknown origin, I'm otherwise healthy). I took meds for the candida and have very, very slowly been making some progress eating again. I'm still on a soft/puree diet (eggs, soft fruits, cooked veggies, bone broth, blended cereal with coconut milk). I've lost about 25 pounds over the past 2+ months.
Now I'm taking 20/mg Prilosec (down from 40/mg Nexium) and eating a low-acid diet. I'm frustrated that my healing is going so slowly. I want to be back to my normal self! I still have some much less intense, minor spasms, which are decreasing in frequency. Still have feeling of lump in my throat as well. Feel weak pretty much all the time. Guess I should add generalized anxiety to the list as this has thrown my life out of whack!
I am meeting with a counselor today about my anxiety. Can anyone else relate to my pain? Do you have any words of advice or wisdom for me? Will I have to be be on PPI's forever? Will this come back? (God, I hope NOT!)
Any input is so very much appreciated!
What a blessing to find this community as this disease is pretty isolating!

ChillyGirl:

I've struggled with GERD/LPR for many years. Followed the low acid diets of Drs. Aviv and Koufman with varying degrees of success. I'd feel better but inexplicably get worse again. Had constant difficulty swallowing and even had a food impaction.

Recently, after an EGD, biopsies revealed I have eosinophilic esophagitis (EoE), an immune/allergy disease. Essentially, certain foods cause white blood cells into your esophagus along with inflammation (narrowing of the esophagus). This now explains why I never got fully better and always had some level of swallowing difficulty. (Might be causing your problem, too.)

There are various therapies like PPIs, corticosteroids and a six food elimination diet. I am several months into the elimination diet and feeling like a new person. Am able to eat without having the ubiquitous glass of water there to make sure I get the food down (even chicken or sandwiches were always a challenge). Not 100% sure, but think my food trigger is either gluten or dairy.

So, if you have not done it already, discuss EoE with your doctor. Problem is that biopsies of your esophagus need to be taken to get the diagnosis. Also, take a few minutes to research EoE (below is a good general link). It might be illuminating.

https://apfed.org/about-ead/egids/eoe/

Best of luck with journey toward esophageal health.

GG

Post Edited (GuitarGERD) : 10/8/2019 2:28:13 PM (GMT-6)

Hi again.

The biopsy needs to show 15 eosinophils per high power viewing field (I had 25) for a diagnosis of EoE. If you don't meet that threshold then you probably don't have EoE. Great news.

As for allergy tests: Standard skin prick tests don't work for EoE. I did it anyway and no food allergies were found (which my allergist/immunologist said was typical). As I understand it, the allergic reaction is not immediate like say with peanuts or wheat. The inflammation caused by the eosinophils is more gradual, which standard skin testing won't show.

My diagnosis took only a few days. Lab turned over the biopsies pretty quick. But if it were not for my food impaction, I doubt they would have tested for EoE.

Having an episode with this myself. Unfortunately, I'm in Asia and there are language and cultural issues in health care communication. The information on the threads was quite insightful and helpful. I'm trying with positive affirmation to jump-start my mind-body link if any... I repeat all my cells know what to do in order to heal.
I suppose it helps deal with anxiety-related issues. I'm following a low oxalate diet for Kidney Stones and the food restrictions seem to contradict the GERD Diet profiles or the other way around... Thus confusing. However, my health is getter each day in every way. Losing weight, adjust my eating behaviors, and using portion control... Actually not eating much and following the food recommendation for both GERD and Kidney Stones... Keep the faith...