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MeltingInerds 04-08-2012 09:37 PM

Why don't even gastroenterologists know the cause?
I truly feel like I'm going out of my mind. I've never had any health issues my whole life. In fact, I've always been pretty fit and had a normal BMI. I'm vegetarian, eating tons of whole grains, fruits, and vegetables plus drink white tea (which I thought was scientifically proven to promote health).

I'm 50 and suddenly a few months ago I starting waking up at night with a very distinct and weird taste in my mouth. I didn't know what the hell it was so just assumed it must have been from eating garlic or something. Then I went to get my teeth cleaned and one tooth was SUPER sensitive and hurt like hell. The dentist said to stop drinking so much juice. But I wasn't drinking hardly any juice, and no alcohol, so I didn't know what the hell he was talking about.

Sorry to drone on so much, but I am so frustrated, angry, enraged, and depressed about this! To cut to the chase, I finally added it all together and realized I had acid reflux. At that time, it was just the symptoms at night and no heartburn. But now all the symptoms have gotten 10X worse and my mouth is constantly filling with acid, even if I sleep elevated (I still don't understand how the acid so easily goes against gravity).

I was trying to train for a new job during all this, so I don't have any health insurance. I finally went to a gastroenterologist and had to pay several THOUSAND dollars for an endoscopy (he recommended getting a colonoscopy at the same time) and he prescribed emeprazole. When I tried to find out the cause, he said "We don't know". This is making me go crazy.

How can all these so-called 'experts' not know? I have heartburn all the time now and find no joy in eating at all and even drinking water is uncomfortable. Whenever I saw heartburn commercials on tv, I always thought it was for huge obese people eating entire pizzas and tons of junk food. Boy was I wrong. I eat a super healthy diet and yet I feel like my whole insides are painfully dissolving away, as well as my tooth enamel now permanently destroyed.

I have tried to research about the LES, but again it seems like even the 'experts' see it as a mystery. Can't they look at the thing during an endoscopy and physically SEE what is wrong with it and why it is opening? Isn't the LES the key to everything and not all this garbage about reducing acid with Prilosec, etc?

I'm sorry to rant, but this whole ordeal has basically ruined my life. It came out of nowhere and that is what is most frustrating. If I developed lung cancer from smoking, at least I would know what was up. If I had a heart attack from eating too much fried foods, it wouldn't be a surprise. Yet 6 months ago, I had never even heard of acid reflux or GERD. And now it is all I think about 24/7. Yesterday I read about apple cider vinegar, that licorice stuff, glutamine, and aloe vera juice and bought them all at the vitamin store. I'm rotating through all of it all day long, but so far nothing seems to be working (of course I'm only on the second day, lol).

Anyways, thanks for letting me rant. The one positive part of my day was discovering the discussion forum so at least I know there are other people out there going through the exact same torture. Tomorrow I see the gastroenterologist again and shell out another $200!

miserablewiththis 04-09-2012 07:33 AM

Re: Why don't even gastroenterologists know the cause?
Iam So sorry for you feeling like that
but welcome to the boat ,
would you describe your main symptom ?
I mean what is your most annoying symptom?

gingertea 04-09-2012 09:53 AM

Re: Why don't even gastroenterologists know the cause?
When you had your endoscopy did they take any biopsies to check for H Pylori? I had all the same symptoms, including a destroyed tooth. A biopsy from the endoscopy showed H Pylori and because of reflux it travelled all the way up to my mouth and did some cell damage in my esophagus. I took a triple antibiotic treatment for 2 weeks and was able to get rid of it. I was prescribed Nexium and 7 years later I still need it on occasion. I've had several endoscopies since then, mostly to make sure the cell damage was not causing any problems. Now I only need one every 3 years. I've learned what foods trigger the reflux so I stay away from them. I've tried several acid blocking medications, and the only one that works for me is Nexium.

I have heard of biopsies that come up negative, but it's because the gastro didn't get the tissue that was infected. There are several articles on H. Pylori on the internet. You should read them. It is a very common condition, but most people don't know they have it. It doesn't cause problems with everybody.

Good luck!

janewhite1 04-09-2012 07:05 PM

Re: Why don't even gastroenterologists know the cause?
Feel free to rant all you need to!

In some people, the LES is very weak. It looks OK, but it doesn't tighten the way it should. No one knows why this occurs, but it is believed to be a neuromuscular problem.

Also in some people, the stomach just empties slowly, which also contributes to acid reflux.

I'm also thin, healthy diet, etc. My reflux started at age 24 and got bad at age 29. I tried medicines like omeprazole, they worked for a while. Eventually I wound up getting surgery to strengthen my LES, which has helped a lot.

MeltingInerds 04-09-2012 09:01 PM

Re: Why don't even gastroenterologists know the cause?
Thank you all so much for your comments and support. Yes, when they did the endoscopy, they said they checked for H-pylori too and it was negative. I remember because I don't have insurance and that was a separate bill that cost something like $600 alone just to look at a couple of slides. The costs were insane. I remember I researched everything beforehand and the cost of the whole procedure (endoscopy + colonoscopy) was supposed to be around $800. When I asked the doctor to confirm if that would be about right, he scoffed and assured me it would be significantly less.

Yet when all was said and done, it cost me about $3,000. What the doctor even seemed to be unaware of was that I got a totally separate bill for the anesthesia and also a huge bill from the pathology dept which just looked at two slides. I honestly consider these people to be criminal opportunists who seek to profit off people in need at their most vulnerable time.

Anyways, today was very positive, but I'm being very cautious and suspicious. My symptoms were getting so bad with constant heartburn and my teeth being melted from acid at night, that I was extremely depressed. Then for some reason, last night I only had to get up 3 times instead of the usual 4 or 5 and I woke up feeling pretty good. It's sort of like that thing where your car has some problem, then when you go to the mechanic it magically disappears.

I went to the gastroenterologist, had to wait almost an hour AFTER my appointment time, then was rushed in. I tried to ask as many questions as I could before he blew me off and raced off to the next dozen patients. But I really didn't find out anything new. He once again said they don't know the reason for the LES becoming messed up. I can't handle the thought of being on this medication (emeprazole) for the rest of my life, so I'm not sure what I'm going to do. When I told the doctor that one of my main concerns is how my tooth enamel is being damaged and my teeth are sensitive all the time now - he tried to downplay that and said that people have acid reflux for years and he almost never sees tooth damage. I find that very hard to believe.

So I am going to dedicate myself to reading this forum, as I have already learned more here than from the doctor (today's 10 minute chat cost me another $120). I am also going to continue taking the licorice extract, glutamine, apple cider vinegar, and the aloe vera juice. I've only been taking them 2 days now, but maybe that is why I already feel better.

Thanks again for having this great discussion group. :)

janewhite1 04-09-2012 10:07 PM

Re: Why don't even gastroenterologists know the cause?
1) If the omeprazole and natural treatments don't help, find a different gastro.

The fact is, PPIs drastically help about 90-95% of people with acid reflux disease. (This board is predominately populated with the other 5%, simply because those are the ones still looking for help.) When you are in that other 5%, some gastros want to help you. There actually are other treatment options! But some just don't want to bother.

2) Try to dispute the anesthesia bill, if it hasn't already been paid in full. You never know, they might knock a few dollars off. And next time, don't ask a doctor the price of a treatment, they haven't a clue. Speak to the hospital billing department.

3) Go to the drugstore and buy a mouthwash called ACT, preferably the alcohol-free version. Eroded molars are very common in people with GERD (I once had a dentist basically ask if I was bulemic) and ACT or another fluoride mouthwash can prevent or even reverse damaged enamel. Use according to the package directions, once a day. It worked for me!

luca689 04-10-2012 07:51 AM

Re: Why don't even gastroenterologists know the cause?
I understand how you are feeling, but sometimes there just isn't an answer as to why. Most people don't remain on PPI's forever, at least. And it's not so bad if you do have to take it long term, as long as your bone density is monitored. I take them twice a day and have done so for several years, as Rx'd by my Dr. Of course, my GERD is part of my autoimmune disease, so I might be a tad different in my progression, but I can honestly say that the PPI's have helped me tremendously. I wanted to mention also, when seeing Dr's they often seem rushed nowadays, and it is helpful to write down your questions ahead of time, or your top concerns. Pick the top 3-5 or so and address those questions specifically. That helps manage your Dr visits efficiently and makes the most of your visit. Good luck and I hope that your condition is a temporary one.

miserablewiththis 04-10-2012 04:51 PM

Re: Why don't even gastroenterologists know the cause?
What Autoimmune disease are u suffering from Gdiluca?

luca689 04-11-2012 06:38 AM

Re: Why don't even gastroenterologists know the cause?
Nowadays it's called limited systemic scleroderma. GERD and esophageal problems are part and parcel with it.

JudeNZ 04-12-2012 02:56 AM

Re: Why don't even gastroenterologists know the cause?
Have you checked out the thread on Vit D, as for many sufferers they find low Vit D may be contributing to their LPR.
For me mine was in normal range, although at the low end.

Just a thought for you.


MeltingInerds 04-12-2012 01:22 PM

Re: Why don't even gastroenterologists know the cause?
Thanks again for all the feedback. This was already worth more than the thou$ands I've spent out of pocket on medical bills. LOL, when I went to the gastro the other day, I had a whole sheet filled with questions ready to go. I didn't want to forget or get flustered.

I've been doing the mouthwash thing too. Right after the dentist told me my enamel was being eroded (and he said it would NEVER return and there are no treatments to repair it), I was scared out of my whits. I've been using the fluoride mouthwash and also the special sensidyne toothpaste. The most stressful thing is waking up many times at night and tasting the acid and feeling my teeth and gums hurt (not really hurt, but like tingling) and know they are being destroyed. I had a glass with baking soda by my bed, but in reality I think that only neutralizes it for a few minutes at most. Now I started waking up with a sore throats too.

I'm taking the calcium supplement too. I asked the doctor about that but he didn't seem to know the specifics. What I mean is: if you are taking the supplement does that mean you're successfully counteracting the absorption loss? Or does the emeprazole still block even the supplement?

I can't believe 'autoimmune' was mentioned by someone here too! That is exactly another thing I asked the doctor. I have NEVER EVER had any kind of health issues my whole life. But at almost the exact time I got GERD, I started getting a flaky rash on my eyebrows and scalp. I paid another $95 to see a dermatologist and he said it's seborrheic dermatitis. I believe that has some kind of autoimmune component so I asked the gastro if it might be related to the GERD too. But the doctor totally blew me off and said there is no connection. I also asked about other more dire reasons for the GERD, like maybe a tumor or something. But he totally discounted that too. Yet I've read about pancreatic cancer causing high gastrin and there must be other causes too.

winghall 04-12-2012 03:27 PM

Re: Why don't even gastroenterologists know the cause?
Have you had any emotional turmoil prior to the onset of the reflux? I noticed that my reflux comes (and stays for a long long time) and goes with emotional disturbance eg. stress at work, father passed away, etc...I think when we are under emotional stress the brain automatically sends the wrong signals to the stomach.
A lot of us, people with reflux, tend to have anxiety unless there is something really physically wrong with the stomach: presence of pylori, hiatus hernia.

JudeNZ 04-12-2012 05:46 PM

Re: Why don't even gastroenterologists know the cause?
Hi winghall

While not everyone will agree with you I'm inclined to do so, and others will also.

Mine has been at it's worst when under extreme stress. Since a breakdown 10 years ago I am inclined to be anxious about my health and other people's. That's why I stay away from the boards for periods at a time, for self preservation.

It's also why last year when I began having throat issues the drs discounted when i said it started after the bronchitis. They said virus, possible laryngitis, and relfux from worrying about it. I kept asking but why has this happened only after the bronchitis. The fact I tutor didn't help as my voice gets a hammering from my job.

But for reflux for me yes I think stress can make it wrose.


janewhite1 04-12-2012 06:29 PM

Re: Why don't even gastroenterologists know the cause?
The calcium supplements: If you are taking PPI, calcium CARBONATE is useless. Calcium CITRATE should be absorbed pretty well.

It's true, baking soda in water doesn't last long. A baking soda toothpaste might stick a little better, though.

Tandem Rider 04-12-2012 07:21 PM

Re: Why don't even gastroenterologists know the cause?
I went to two different gastroenterologists each of them twice. They did an endoscopy, said I was fine, and take a PPI. The doctors did not seem to care when I explained how much the reflux bothered me.

I continued to struggle with reflux. Finally I went to the Heart Burn Clinic at Hancock Regional Hospital. They gave my an ambulatory pH test and my reflux was severe.

A year ago I had a TIF, am off PPIs and am much better. Mine suggestion is to look for a heart burn clinic.


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