I'll try to keep this as brief and to the point as possible. I'm hoping for two sorts of answers: 1) Someone who's been where I am and can give me an idea of what to try next, OR 2) somebody who can just throw an idea my way, something new to consider, something I've missed.
Basic info: I'm 20 years of age, male, 6' even, and weigh about 185 lbs.
Conditions: I was diagnosed with both Celiac Sprue and GERD at the age of 14, via both barium x-ray and endoscopy procedures. Celiac was confirmed by expert examination of biopsy tissue. Last week I had another scope done. The biopsy reports aren't back yet, but physical examination showed cracking of the esophagus due to reflux.
My story is a little bit complicated. I was diagnosed with Celiac and GERD at the same time. Since that diagnosis, I have stayed completely true to my diet. I was put on increasingly high doses of Aciphex by my GI doc, sometimes as much as 3-6 pills a day, and my symptoms just kept getting worse except heartburn. They were bloating, nausea, lack of appetite, heartburn, regurgitation, a painful "cold" sensation in the stomach, and feeling weak/tired all the time.
My heartburn went away on these high doses of Aciphex, but I continued to regurgitate small portions of whatever I'd just eaten. There was just no acid in what I regurged, or so little I could not taste it.
My GI doc thought that Celiac might have been the root cause of my GERD, so he told me I could stop taking the Aciphex after several months of faithfulness to the diet. I did, and I got mild heartburn in return for a reduction of all the other symptoms. For years I stayed pretty content with that. Although I was unable to digest solid foods well, I was able to find liquid sources of nutrition and even gain weight with solid foods making up perhaps only 10% of my calorie sources.
As I said, for years that was my status quo. In the past several months, however, all my non-heartburn symptoms have gotten progressively worse. So I went to see another GI doctor, who ordered an endoscopy after the first meeting. After the scope, he said that I have a small hiatal hernia (he says it's nothing to worry about), and cracking of the esophagus. He prescribed Nexium.
So I started taking it. Two days into the regimen, I was up until 4 AM regurgitating food, acid, and having heartburn like I've never had before all 24 hors of the day. So I stopped taking it. A few days later, I started feeling better, but still with severe heartburn (which I have never had before, until after this scoping procedure/Nexium). Then all my other symptoms started coming back. (bloating, nausea, lack of appetite, etc. etc.) Frustratingly my heartburn continued as well, far worse than ever before.
I spent my nights regurgitating acid pondering my problem. OTC antacids weren't doing a thing. (4 times the normal dose of Zantac chugged down with Pepto Bismol came back up a few times...along with a lot of acid.) It occurred to me that both the Nexium and Aciphex reduce the level of acid in the stomach, and this made the problem worse. So perhaps to make it better, I needed more acid?
That seemed very counter-intuitive to me, but I decided to fly with it and Googled a few strings like "heartburn low acid" and "GERD due to low acid", and found this website: http://members.aol.com/mcfighter/heartburn.htm
Which seemed to comply very well with my reasoning. Made every bit of sense, actually, given that lowering the acid level seems to make it so much worse. (If you didn't visit the site, it basically says that regurge and GERD can be due to low stomach acid, which makes it tough for the stomach to digest the food, so it pipes it back up the chute, along with a bunch of what little acid is left in the stomach.) It suggests fixing GERD by taking Betaine Hydrochloride (Betaine HCL).
I tried it. Next day I got some Betaine HCL and took it with a meal. Lo, and behold! My appetite is better than it's been since I was age 12. I can eat solid foods. Every single one of my symptoms (and some I didn't even associate with GERD) are gone. Except one.
Mild to severe heartburn. All day long. All night long. No regurge, at all, not even once...but I have heartburn and the back of my throat with that nasty bile taste.
Any ideas on what I can do from here? I seem to have two options...one the frying pan, one the fire. Refrain from the antacids, take the Betaine HCL, and actually be able to eat/feel good, but have heartburn. Or take the antacids, feel like crap (the flu doesn't even begin to compare to some nights I've had on Aciphex/Nexium...), but not have my esophagus permanently damaged by erosion.
What I need is a third option. I need ideas...something to try, to shoot for.
Here's my diet/lifestyle, just in case anyone thinks that might be the issue:
No alcohol. No smoking. No caffeine. No carbonated beverages. No chocolate. If I have fatty/oily foods, I have small portions and space them widely apart. No minty stuff. Very little spicy food, and small portions spaced widely apart in the day. I am in good physical condition. I use an elliptical machine 20-25 minutes a day, 4 days a week, and lift weights at least 4 days a week. (I've lifted weights since age nine, and my body mass is far more given to muscle than fat.) I drink at least a half gallon of straight water a day, and often 1.5-2 gallons of healthy fluids (water, gatorade, milk, juice, etc.) total. I supplement with Animal-Pak multivitamins, L-Glutamine, and buffered creatine. (My last blood test showed creatinine levels at higher-than-normal, but safe.)
Any ideas? any suggestions? And advice on how I can keep taking the Betaine HCL (or something similar) to feel great and be able to eat...and get rid of the heartburn? I think I've established fairly conclusively that my stomach doesn't have enough acid, so any acid-reducing measures do a lot more damage to me than someone whose stomach actually makes enough. I can't digest food properly without acid supplements. Yet even with that I have heartburn issues. Could it be the hiatal hernia, and my doctor is wrong when he says it wasn't that serious? My only guess is that my sphincter is seriously screwed up...what do you think?
I'm open to any criticism/suggestions/questions...thank you very, very much if you took the time to read this and will reply.