GERD (Acid Reflux) Community
Help! Feeling desperate!
About This Community:

This forum is for questions and support regarding Gastroesophageal Reflux Disease (GERD) / Acid Reflux with topics including: Causes, Constipation, Diagnosis, Diarrhea, Drugs and OTC medications, Living with GERD, Loss of Appetite, Preventing Flare-ups, Risk Factors, Symptoms, Support, Surgery, Tests, Treatments.

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Help! Feeling desperate!

About me: I’m 37, 115 pounds, healthy and active female. I have no other medical conditions and have never been on any medication for any length of time. I am negative for H Pylori.

My story: About three months ago I developed acid reflux. It seemed to come on overnight. One day I was fine, the next day I couldn’t eat anything without severe discomfort. I’ve never really experienced traditional acid pain in my throat or chest. My main symptoms were: extreme pressure just under ribs (making it difficult to breathe at times), extremely dry and hoarse throat in the mornings and stomach discomfort. At one point prior to diagnoses, the discomfort was so bad (shoulder pain, back pain, etc.) that I went to my local urgent care clinic thinking I was having a heart attack.

After a few weeks of this I went to see my dietician. She said that my diet was already excellent and that she couldn’t make any significant recommendations. I’ve never been a coffee/tea/alcohol drinker, so that wasn’t an issue, but I did cut out tomatoes, chocolate, citrus, garlic and onions. I have also slept with an elevated bed, never eat 3 hours before bed, etc.  

From there I went to see my doctor who put me on 20mg of Losec / day. I did that for a week and felt great! I decided to taper off the drug. Almost immediately the acid returned – with a vengeance! It seemed to be worse than ever. The doctor told me to go back on the meds for a minimum of 2 months straight. He upped my dose to 40mg / day and suggested supplementing with Gaviscon when I noticed symptoms.

It’s been 6 weeks now since I’ve been on the double dose of Losec. Felt great for the first couple of weeks, and then I started to notice symptoms again. They are definitely manageable with the medication – but still noticeable. My main symptoms now seem to be difficulty swallowing, throat clearing and sweet taste in mouth on occasion.
I’m feeling very alone in this right now. I seem to lack any focus at work, am feeling depressed and the difficulty swallowing is starting to make me anxious. I’m wondering if the Losec might be making me depressed.

I plan to go see my doctor in a couple of weeks once I’ve been on the medication for 2 months. I really feel like at my initial meeting he really didn’t address many of my concerns – or discuss any underlying cause of this – just put me on the meds and pushed me out the door. To this end, I want to make sure I have my questions lined up for the next appointment.

I’d appreciate your answers to these questions, and any additional questions you might recommend that I ask my doctor. I’m generally pretty Type A about things and I am really determined to get to a solution.

My major concern at this point is that my husband and I would like to have a baby. At 37, I need to get on this as my biological clock is ticking. Unfortunately, Losec is contraindicated with pregnancy. I’m concerned I’m going to have to be on this medication long-term and won’t ever be able to try to get pregnant. Help!

Alright, here are my questions:

1) What might be the causes of this condition?
2) Why might it have come on so suddenly?
3) Should we be investigating an underlying cause?
4) Aside from medication, what else should I be doing to treat this?
5) What alternative / complimentary treatment options should I be seeking (i.e. acupuncture, chiropractic, nutrition, exercises, etc.)?
6) Who are the experts in this field?
7) Who are the best specialists?
8) Who is conducting research into this?
9) Where can I find the most recent research?
10) What is the purpose of the medication?
11) Is this medication treating an underlying cause of the issue or just the symptoms?
12) What is the plan if this medication does not work?
13) How / when do I taper off of this medication?
14) Is there a high likelihood of “withdrawal” making my symptoms worse? If so, what is the plan for that?
15) What is the next step if the medication doesn’t work?
16) What are the latest developments in the treatment of this issue?
17) Is there an alternative treatment plan that I can be on while my husband and I try to have a baby?

Any and all help would be tremendously appreciated.
10 Comments Post a Comment
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620923_tn?1416285879

  Hi and welcome to the GERD forum.

First, try to relax...stress can cause GERD symptoms to flare and with all the questions I get the feeling u r very anxious.

Next, the Dr u saw and got the meds RX'd from, was he a GI Dr or a PCP and were ne tests done?

Low acid levels can cause the same symptoms....so do see a GI Dr get tested to see what is going on so u r treating it the best way.

and again, try to relax <3
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4408174_tn?1370985495
HI,
In reply to your questions:
1. it sounds like acid reflux disease or GERD, you may have developed oesophagitis.
2. difficult to be certain. You may have developed a hiatus hernia suddenly. The acid reflux is caused by a lax valve between the esophagus and stomach - the LES
3. the diagnosis is usually mad on the history and most gastroenterologists do not recommend endoscopy initially, but this may be advised if your symptoms persist or recur.
4.lifestyle and dietary changes - complex - see this article:
http://www.enetmd.com/content/gerd-diet
5.nutrition
6.depends on your location. the author of GERD articles in specialist medical books is: Joel E. Richter, MD
Professor of Medicine
Chair for Esophagology
University of South Florida
Director, Division of Digestive Diseases and Nutrition
Director for Swallowing Disorders
10. losec reduces acid production by the stomach lining.
14. rebound worsening of symptoms is a well described and common problem with ppi's like losec. the answer is to come off it  gradually.
15. if losec fails to work then nexium (esomeprazole) is more effective. If this fails then the options include adding motility agents like domperidone. the last resort is surgery
17. you have to be careful with medication when trying to fall pregnant. take advice form your doctor. antacids are generally thought to be safe as are drugs like ranitidine (Zantac)- though always take advice from the prescribing doctor and ideally your specialist obstetrician- you need to take great care with medications if pregnant. you will need to pay very close attention to your diet and lifestyle to minimize symptoms if you are pregnant.
for detailed advice about acid reflux disease check out:
http://www.enetmd.com/content/acid-reflux-disease
best wishes Lucy
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Avatar_m_tn
Thank you for your responses.

I have modified my diet 100% (for the last 3 months). It is "pristine". I work closely with my doctor and a dietician on this. I am very active and have always been a healthy eater. I eat zero processed foods (never have), have never had a pop in my life, don't drink coffee, tea or alcohol. I suppose that is why this is so frustrating - I seem to be doing everything right. Per my doctor's recommendation I have eliminated basically all fats (including healthy fats like olive oil), tomatoes, garlic, onions.

The doctor just prescribed domperidone to take on top of the Losec. After 4 days my symptoms seem to be getting worse, not better.

I have just been seeing my GP (although he is the head of a private clinic). He told me I don't have a hiatial hernia (though I don't know how he knows that). Other than the h-pylori test, they have run no diagnostic tests.

I don't feel like the medications are helping at all. In fact, it just seems that we are layering up medications to "cover up" the problem and not really dealing with any underlying cause.
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Avatar_m_tn
My acid reflux completley went away 24 hours after I stopped eating gluten. Don't have any ever since.
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620923_tn?1416285879

  Hi....u may want to try seeing a GI Dr and have other testing done.......

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Avatar_m_tn
Seeing a specialist on Friday. Thanks for the suggestion.
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620923_tn?1416285879

  Good Luck on Friday.,...and do let us know how it goes : )
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Avatar_m_tn
The specialist appointment did not go well. Basically they told me that they will schedule me for a scope, but that it would likely show one of two things: hiatal hernia or GERD of "unknown origin". Said that this is likely a chronic condition I'll have for the rest of my life. They also said standard treatments are lifestyle modification and medication - neither of which are working for me. They acknowledged this and when I asked how I was supposed to live, they had no answer. They mentioned the Nissen Fundloplication but said it was not without complications. From the research I've done, it seems to have a lower rate of success for people like me who do not respond to PPIS. I'm in dire straits at the moment.
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10625472_tn?1411598083
Hi Josie, I have a lot of the same issues. Have you got any answers?
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Avatar_m_tn
I thought it would be interesting to post an update. After aggressively seeking more diagnostic tests, my doctor had me undergo an endoscopy. It showed signs of celiac disease. Shortly thereafter, I had a blood test to confirm the diagnosis. I have been gluten free for a year and am 100% back to normal (but of course, will have to maintain a strictly gluten free diet for life). Because my symptoms were not "classic" celiac disease symptoms, it was by sheer luck (and by being a strong advocate for myself) that I got the diagnosis. In fact, I posted on another forum here and the doctor told me that "celiac disease does not cause heatburn". Actually, untreated celiac disease has upwards of 300 different symptoms (including heartburn).  I hope this information helps someone else!
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