Gastritis - Not responding to meds - Doctors are puzzled

In October 2004 I was diagnosed with Gastritis, symptoms were indigestion, nausea, stomach gas and black tarry stools. I don't drink or take NSAIDS and my diet has always been on the healthier side. At the time I was under alot of stress and drank alot of coffee. Since the diagnosis, I have eliminated the stress and quit drinking coffee, eat only healthy foods, no sugar, meat, dairy or simple carbs. The problem is that I'm not responding to any medications and suffer from excruciating flare ups about every 3 weeks. I've used Protonix, Nexium, Prevacid, Prilosec, Carafate plus a few more meds for cramping. I've had an Endoscopy, Endoscopic Ultrasound, MRI, Cat Scan w/contrast, Abdominal Ultrasound, X-Rays - all were normal with the exception of the gastritis and Duodenitis = NO H.Pylori. I'm scheduled for a colonoscopy in a few weeks.  Blood tests, normal - Celiac, Normal - Allergies, Normal - I was tested for Parasites, Lyme Disease and almost everything else the doctors could think of - all normal. Since October, I have lost over 20 pounds and Doctors are concerned about it because I'm still losing. I'm Female 5ft 8 inches tall and now weigh 108 lbs. I have been in constant pain for these 8 months and my diet is extremely limited to only certain tolerable foods such as vegetables, fruit, cereal and plain pasta. Eating is pain! I have been to the ER 4 times for pain, and have seen 4 GI Doctors. I have extreme burning in my stomach itself (upper left) and burning just up and to the right of my belly button (duodenitis). My stools are normal, no diarrhea. Some mucus, but I was told that it was from the medication because it began right after I was put on medication.
        My Doctors have absolutely no idea what is causing this and why I'm not responding to Medication. They are now sending me to a University for further evaluation. Is there anything that you can think of that might be causing this?
        Are there people who just don't respond to a certain type of medication such as a Proton pump inhibitor? I have tried to wean off these meds, but just experienced another flare up. The flare ups are occurring more frequently now and with more intensity and is much harder to control. My life has been centered around controlling the pain these past 8 months and I am desperate to find the answer - Would appreciate any advice you can give.           Thanks

[Kevin Pho, MD]

You have been through a pretty comprehensive evaluation, including 4 GI referrals.  It would be unlikely that I can come up with something over the internet that hasn't already been thought of.  

One consideration would be a 24-hr pH study.  This is the definitive test for GERD, and if you continue to have reflux despite medication you may want to consider a surgical consultation.

I would discuss this option with your personal physician, or in consultation with another GI evaluation.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[sera10]

Check out symptoms of celiac disease. I had symptoms very similar to yours...was finally dx'd with small bowel follow through as damage to small intestine was patchy vs overall. Now the capsule endoscopy would pick it up if that is what is bothering you. About 1 in 137 people in US have this, but only about 1 in 10,000 are dx'd. Dr.'s don't learn much about it in medical school...no pill for it...it is a reaction to wheat/barley/rye & eliminating these foods from diet is treatment. Good luck.

[sonorason]

A related discussion, stomach pain was started.