Entering the GERD community...

Hello Everyone -

Well, here I am, at the start of my journey.  My first heartburn was after a coffee and beer at age 21.  I've had mild amounts until about age 30 (usually Prilosec treated it), where I started having "attacks" of acid around 9-10pm at night.  I have never had any pain during sleeping.  I wasn't sure what the attacks were - my doctor put me on Protonix.  Later attacks received Nexium for a couple of weeks.  I remember having stomach discomfort on both of those drugs, and had to stop taking them after a short time.  My triggers seemed to be coffee and chocolate.  If I drank coffee ANY time during the day, I would have an attack at 9pm that night.

Enter the last year.  In January, I took Prednisone for asthma and a nasty cough, the first asthma I had ever experienced.  From day one of taking it, I had heartbun galore, typically around 9pm-10pm in my "attacks".  After a five day course, my heartburn was mostly in full swing.  By March, I was on Prevacid (my GP again), and sometimes I needed Zantac during the day to stop me from feeling dizzy and nauseated (even when no burning was present).  I still had no real clue about GERD, etc. After many nights of more recent "attacks", I saw a specialist who sent me in for ultrasound and endoscopy.

The ultrasound showed two small gallstones.  My doctor suggested that the gallbladder could come out if the pain was from the organ, but suspected my esophagitis and grade B erosion was from acid reflux, and I had a loose valve (LES?).  The solution?  Aciphex.  The first week was great - no pain, but a growing tiredness had me somewhat worried, but again, bloating, and lower bowel pain.   Then in the second week, I was constantly tired, and I felt like I was always severely hung over.  Then it quickly went horrible - I felt unlike myself, and in a deep, thick fog.  I couldn't think right,  and I was eternally tired.  I stopped taking the Aciphex and within two days, I was 70% recovered.  A few days of good sleep and things got better, but my acid returned like a demon.

Here I am now today - taking Prevacid or Aciphex every 2-3 days and off for a day or two as the headaches and fog return.  People ask me "what's wrong?" all the time, but I didn't know it showed.   I have noticed that if I push my stomach out when the acid feeling starts, I can stave off an attack for quite some time, or keep it mild.  I'm overweight, but not excessively so - I'm trying to lose some lbs.

I feel like the PPIs have only made the acid worse, and everything seems to make me sick.

Zantac - works very well, but can't sleep properly and causes some mild depression, constant urge to use bathroom.

Prevacid - intestinal pain, tired and mental fog.

Aciphex - works decently, but very noticeable muscle pain, joint pain, tired and mental fog.  Mild stomach pain, but better than acid reflux.  Also gave me hot flashes at night after taking it (red face, sweating).

Nexium, Prilosec - intestinal pain, sweats, uncomfortable stomach in the extreme.

My family thinks I'm crazy because "normal people" can take PPIs without complaints.  I seem to be overly sensitive to drugs, but the pain and headaches are VERY real to me.

Diet - In the last two days, I started a gluten-free diet on the chance that gluten is an issue, but am having a hard time finding gluten-free items.  My endoscopy said I had no celiac disease, no ulcers.  I drink a fair amount of milk, perhaps 2-3 glasses per day.

My questions are these:

1) Why does coffee cause attacks at night, when I drink it 14 hours earlier?  Does coffee really last that long?

3) Should I stop the PPIs entirely?  My doctor would say keep taking them no matter what.  I'm tempted to quit them, because they make me ill.

4) Mylanta works pretty well at night for calming the acid, but it has aluminum in it.  My doctor says there is no risk from aluminum - should I care?

5) I asked my doctor about surgery, but he said No, it wasn't always effective and even then it typically fades over a 10 year period in efficacy.  The surgeries sound very "infantile" in the medical field.  Why don't we have better cures yet?

6) WHY aren't there any exercises for the LES to strengthen it?  It's a muscle!  If it is loose, I'm up for getting it into shape.  How?

7) How many of us with acid reflux have gallstones?  Are they connected?  Will removal of the gallbladder help with reflux?

Thanks for anyone who has some solid answers.

60% of adults are intolerant to milk, either because they can't digest lactose (milk sugar) or the protein in the milk.  So that could be one of your triggers, but not necessarily the only one.

Keeping a food journal is what my allergist recommended.  You'll soon find which foods are not tolerated, and then you can do a food challenge to find the amounts.  Remember it's not necessarily the whole food, but often a small, not necessarily listed, ingredient in the food. 

Ingredients like sulfite and MSG are often the culprits.  They are both found in many of the same foods, so you have to do months of research on your diet to figure out if you have food triggers.

I have a problem with not only foods, but also many medicines, both Rx and OTC.  The liquid stomach meds are the worst for me.  Watch for the "inactive ingredients!"  Sugar alcohols, like sorbitol cause diarrhea.  Dextrose, maltodextrin, gelatin, powdered (confectioner's) sugar, many flavorings and dyes are sulfited and can trigger reflux in sensitive individuals.