u/surlier

After 3 years of suffering, I'm nearly back to normal. A summary of my experience and what worked/didn't work.

I experienced chronic gastritis for three years and I am now 95% back to normal. At my worst, I was living off of about 10 safe foods and had dropped down to 113 lbs (at 5'11). I was struggling at work because of how sick and tired I felt, and it really nuked my social life because I couldn't share meals with anyone anymore. Currently I am back to a normal weight and able to eat almost all the foods I used to enjoy including chocolate, coffee and beer. The only thing that still gives me problems are certain seasonings. I wanted to share what helped and what didn't for those who are currently struggling, as well as offer hope, because I know it really felt at times like I would never recover.

Symptoms:

I first started experiencing symptoms in July 2023. My primary symptom was gnawing stomach pain, which was especially noticeable in the middle of the night. This would wake me up and I would have to eat in order to make it go away. Sometimes I would wake up to 3 times in a night, and was basically getting no sleep. I also experienced severe burning pain in the stomach, as well as nausea and general malaise. Two endoscopies revealed gastritis, but I was negative for a variety of other issues including h. pylori and cholecystitis. Bloodwork was generally clear except for some autoimmune indicators.

What worked:

  • mirtazapine
  • pregabalin
  • RPAH diet

It was very gradual, but a combo of mirtazapine (7.5 mg for me, but YMMV) and pregabalin (25 mg, again YMMV) slowly seemed to heal whatever was going on. I took both for over a year, and I noticed very slight improvement about a month or two after starting this combo, and a mostly slow but steady decline in symptoms as the year went on and I was able to start eating a wider variety of foods. For many months, if I forgot a dose of either one, I would wake up with gnawing pain. It seemed like I really needed the combination of the two for it to work. Recently, after about 18 months of taking it, I was able to discontinue the pregabalin without issue.

The RPAH diet was also instrumental in my recovery. I had tried various diets with no success, including the gastritis diet often touted here. My symptoms rapidly escalated about a month after trying the gastritis diet, and I had to cut more and more foods out until someone on the internet suggested I might be sensitive to salicylates and/or amines. When I cut those from my diet, my symptoms eased up significantly, and I was even symptom-free some days. This was a very restrictive diet, however, and it wasn't until I started the med combo above that I was able to gradually start adding foods back.

What may have helped:

  • rifaximin
  • partially hydrolyzed guar gum (PHGG)

I noticed some difference after taking a second course of rifaximin with PHGG, but there were other variables involved so I can't say for sure. I continued taking the PHGG for several months and noticed a slight increase in symptoms when I stopped, which went away when I started taking it again.

What partially helped:

  • famotidine
  • ondansetron
  • activated charcoal
  • Thorne GI relief

I found that these helped alleviate burning and/or nausea sensations to varying degrees, but not the gnawing feeling that was waking me up at night.

What did not help:

  • all other elimination diets (gastritis/GERD/low FOD-MAP)
  • PPIs (omeprazole, pantoprazole, voquezna)
  • general GI drugs (sucralfate, pepto bismol, antacids)
  • sleep aids (zolpidem, lorazepam, trazodone)
  • other TCAs (amitriptyline, nortriptyline)
  • anti-parasitics (tinidazole, albendazole)
  • other supplements (a LOT of various vitamins and probiotics)
  • talk therapy, hypnotherapy
  • functional medicine

I tried all of these listed here and they either did not help or made things worse.

Here is a list of tests I did that turned out negative or unremarkable:

  • blood/urine tests (CMP, CBC, lipid, hep C, lipase, erythrocyte sed, celiac, vitamin/mineral, thyroid, renal function, liver function, C reactive protein, TB, corisol, amylase, lipase, elastase, porphyrin)
  • h. pylori (breath test and biopsy)
  • abdominal ultrasound
  • CT scan
  • HIDA scan
  • colonoscopy

This is a really horrible condition and I acutely remember how hopeless and lonely it felt to go through. I hope all who are seeking relief find it, and I hope that my post can offer help to anyone experiencing a similar presentation of this condition.

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u/surlier — 3 days ago