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Old 12-01-2012, 01:12 PM   #1
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Help, I'm at a Loss - GERD is Out of Control Despite Being on PPIs - Advice Please?

Hi Everyone,

I haven't posted on these boards since I believe 2008, when GERD started to act up. I'm 31 and have had GERD since I was 16. It was controlled with Prilosec/Nexium for years up until 2008. I started to get heartburn daily and burning/gnawing pain in my stomach. At that point I tried the other PPIs (aciphex & protonix) with minimal relief. The one I ended up sticking with was Prilosec once per day for the last 4 years. It was the one that did the best, but I still got all those symptoms quite often. I decided to ignore the problem until last year, when I had an endoscopy done. I was afraid of the damage being done. Well, the results showed that i didn't have any abnormalities with my esophagus, but it did show that I was having reflux as well as mild gastritis. It was negative for H pylori bacteria. I have no idea how i got gastritis as I do none of the things that cause it.

Anyway, here I am a year later and am suffering pretty bad with reflux, after pretty much everything i eat as well as some burning/gnawing pain here and there. I'm now taking Dexilant (supposed to be the strongest!) and it's barely helping. I'm trying to stick to a bland diet, but even after I ate chicken, avocado, and rice this morning, i still got it bad. I see all these diets that help people, and have been told to start a food diary, but I don't see the need to record it since everything gives me heartburn! My husband works for a GI (the one that did my endoscopy) and he told me to seek a doctor at a college because there aren't many doctors here in Vegas that will help me. So I scheduled an appt to see a doctor at the UCLA esophageal center to get some more tests done. I need to have the ph test and the manometry test done because I feel there is something more going on (hypersensitivity, slow gastric emptying, motility disorder). Who knows! This is just soooo annoying and I'm very frustrated with always having symptoms after eating anything.

Also, I have a few other things going on (fibromyalgia, IBS, anxiety/depression, vulvodynia, hypoglycemia) so I think my body is extra sensitive to pain. I've been off of an antidepressant for a while, so I'm getting back on it now. That will help with the anxiety this is contributing to worse symptoms. However, I still get symptoms no matter whether I'm stressed or not.

Does this story sound familiar to anyone? Any suggestions? I'm pretty much thinking that there isn't any hope and I need to learn to live with constant heartburn/pain. Any advice would be appreciated! Thanks for listening

-Crystal

 
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Old 12-01-2012, 06:28 PM   #2
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Re: Help, I'm at a Loss - GERD is Out of Control Despite Being on PPIs - Advice Pleas

Crystal I feel for you I am 40 and had Gerds for 15 years I have been down the same road as you. Why the PPI start and stop I have no clue but something that may help is DGL chews prior to eating and although I'm on Prilosec twice a day also with some relief I also have bad flare ups where they last for month until somehow I get it back under control I also have taken zantac twice a day along with my Prilosec twice a day 30 mins before eating then right after I would eat drink extra strength Gaviscon until I wold ween off all until I was back down to two a day Prilosec. My GI who is from England says that you have to mix it up every so often or your body will get use to it whether any of this is true I'm not sure but for four years it work well now it's not so maybe there is something behind it.

Good luck keep trying because I found I have non cancerous Barrets esophagus low grade Be vigilant about stopping the burn in your throat treat yourself

Last edited by moderator2; 12-02-2012 at 05:53 AM. Reason: posted disallowed website

 
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Old 12-02-2012, 08:41 AM   #3
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Re: Help, I'm at a Loss - GERD is Out of Control Despite Being on PPIs - Advice Pleas

I haven't posted for quite some time but as I read these posts I can't help but give some advice. In the early 2000's I suffered from acid reflux so bad that I would go to the ER writhing in pain. Demerol was the solution for the pain but the problem of reflux wasn't solved. To everyone on PPI's I say to you that is your main problem. Nexium, Prilosec and all the others are the problem. You continue to eat and think that reducing your stomach acid will solve your problem. But it's quite the opposite. You need stomach acid to digest any and all food. Reducing it only means your digestion is slowed down and you are digesting one meal for 14 hours. Organic apple cider vinegar mixed in water before a meal will help solve your problem. Also take note of the active ingredient in OTC heartburn relief meds. It's Magnesium. When I feel a little heartburn coming on I take a magnesium pill and in 30 mins or less I forget I was even in a little discomfort. I know if I lost some weight it would probably solve many issues but heartburn/Gerd issue is a nonfactor for me since I discovered these two simple cures and it's been 10 years since I been off Nexium. I'm not a doctor but I'm telling you those prescription PPI meds are making your problem worse. Watch your diet and try something else. I would also like to mention that I had some stomach polyps removed which the doctor did not think was causing the problem but removed anyway and I also felt better. I believe the Nexium caused the polyps to begin with.

Last edited by Dc40; 12-02-2012 at 09:08 AM. Reason: more information

 
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Old 12-03-2012, 08:03 PM   #4
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Re: Help, I'm at a Loss - GERD is Out of Control Despite Being on PPIs - Advice Pleas

Sounds like you have gluten intolerance or Celiac disease. Unfortunately the US medical world is not up on this problem. All you have to do is quit eating gluten which is easier said then done. Once you find out that it gets rid of your GERD and other issues you are having you will find it well worth it. Check out all the celiac and gluten intolerance sites you can find and decide for yourself. Gluten intolerance can cause other autoimmune diseases. It worked for me. No more acid reflux or other GI problems.

Last edited by mod85; 12-03-2012 at 10:08 PM.

 
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Old 12-03-2012, 10:02 PM   #5
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Re: Help, I'm at a Loss - GERD is Out of Control Despite Being on PPIs - Advice Pleas

Stretch1one - thanks for your reply! I also try to mix it up, but find I just need more and more. In addition to taking Dexilant, or any ppi, I find I have to take zantac almost daily (I try not to daily since I begin to develop a tolerance) and eating tums and gaviscon after every meal. I guess my condition got worse, or I just resist ppis. It's very discouraging as I'm still young and feel like I don't want to live with this for the rest of my life. I'm sorry to hear that you have Barrett's - I'm scared of getting that. I know though that even a small amount of people with that condition ever get cancer, but it's still scary to think about. I believe I need surgery, but the mixed results scare me I even went out the other day and bought slippery elm, DGL, and digestive enzymes, and I still feel no relief. I just don't know what to do

 
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Old 12-03-2012, 10:07 PM   #6
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Re: Help, I'm at a Loss - GERD is Out of Control Despite Being on PPIs - Advice Pleas

Dc40 - Thanks for your suggestions, but I've tried ACV and it burned like hell! I'm still young, so I'm not sure if my problem would be less acid rather than more. I think that there is actual damage to my LES and I may need surgery to permanently fix the problem. I'm just scared of that!

 
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