Hyper or hypoacidity? And where to go from here?

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.

-Nykus Carus

Thank you much for the response. I have contacted the physician's office and his reply is "Finish with the Nexium, don't eat 3-4 hours before bed, follow the plan, you'll be fine. We'll talk again when your biopsy results get back." Which does make sense; I assume he wants to make sure that nothing obvious is wrong (i.e., something that can be detected by biopsy) before venturing into the what-ifs.

I do plan to discuss this with him and possibly try to find another physician if he isn't open to another explanation (other than the standard Nexium-is-a-cure-all plan). Part of what I was hoping is that the folks here could give me some good ideas I can take with me when I consult with him next.

I do hope your sister recovers from whatever is ailing her and will keep her in my prayers. Thanks again!

Sammss,

It has pepsin. I take an Animal-Pak vitamin with several other digestive enzymes once daily.

I suppose I could try more digestive enzymes along with the Betaine HCL, but I'm not sure how much more "improved" my ability to digest food can get, unless I am to seek a Michael Phelpsian level of daily calorie intake! I can sit down and eat 1200 calories, at least twice a day...and the more HCL I use, the better my appetite gets.

I have a burning sensation behind the breastbone, which (according to what I've read) is indicative of acid in the esophagus.

Can you give me more info on these motility issues, Canyon?

That sounds exactly like what I'm looking for: Alternative explanations.

I am aware of exercises leading to heartburn...which is why I've tried not exercising, doing cardio only, and then doing extreme weightlifting and extreme cardio, to see if any of them made the heartburn better/worse. I feel the same no matter what I do activity-wise.

Do you think it makes sense to put hydrochloric acid into my stomach and then cancel out acid (whether I cancel production or neutralize the acid once produced) with another drug?

My GI specialist's nurse suggested that (pending my next office visit, where we'll go into more depth), but she couldn't tell me why or how it would make sense. I'm not trying to be disrespectful to her, I just want to make sure I'm doing the right thing. She'd never heard of supplementing with acid and I'm concerned that I'd be doing something akin to putting vinegar in a test tube and then canceling it out with bicarbonate of soda.

Does that make sense? Or is it more complex than that? Thanks!

ok if the HCL is helping but causing more pain, then l would say stop taking it as it may mean you are already producing enough acid. I have also read about that one possible cause of heartburn is a lack of acid but if the HCL is making it worse that usually means that there is enough. have you tried taking Apple Cider Vinegar diluted in water or something and drinking that before a meal as ACV is suppose to help digestion but my guess is that it may have the same effect as the HCL. You could give it a try and see what happens but make sure you have something on hand in case it gives you more pain. Before taking the HCL did you get bloating or someting after you had a meal? and when do you usually get heartburn after a meal or just at night?

l've had some of the same symptoms as you (bloating, nausea, lack of appetite, heartburn, tired), my biggest issue was the pain in my stomach and a burning sensation in the esophugus. My pain always came when my stomach was empty and l would usually get relief after l ate. I had blood tests and an endoscope and the results came back ok. I have tried antiacids and PPI before and though they helped a little at first it didn't get rid of it so l stopped those as l think they may have done more harm than good, and l also tried the HCL with digestive enzymes route and while l felt my digestion improve it made the pain in my stomach worse and the burning worse after a few days. Instead l take vitamins and minerals. l don't get the burning pain anymore, l still get stomach pain but it's better than before.

My guess based alot of reading and trial and error on myself is that your sphincter may be weak which l think is the cause of the burning sensation. Can l suggest easing up on the weights (l don't know how much weights you lift) as l think it may not be helping you and may be one of the causes that started your symptoms as you mentioned you lifted weights at a young age. May be stop the weights for awhile and try less strenuous exercise for awhile.

<Edit>  See thread with your name in it.  I moved your post to a thread of your own.