Major Stomach Acid Gastritis, Feel Like I Could Die!

[bekkaz]

I am going to post this on a couple forums because I am not sure of the best place to post.  I have been very very sick since Nov. I have always had stomach issue's, as far back as I can remember...12 years old.  I would bloat way up, usually always was constipated.  Always told me I had IBS.  A couple years ago I went to a functional medicine Dr. after female issue's non stop burning.  At the time I was being healthy, exercising, riding bike, and eating a TON of "healthy" WHEAT!  Regular MD's said vulvadinia, which I 100% disagree with.  However once they named me with that, every Dr jumped on that bandwagon.  Long story short the functional medicine Dr. found I had a fungal overgrowth of the bad guys.  Put me on a strict diet for a few weeks, supplements etc.  My symptoms never really got that much better, or for long.  I told them I was still having issues, they said we think you maybe have mold exposure in your home.  Fast forward, I did...toxic mold that I tore up, breathed in and sent spores through my entire house (my ins. adjuster told me it wasn't toxic or black mold at all)  Fast forward again to Nov. when I discovered my second bathroom also had mold under the floor, I ripped that all up.  I believe the mold is out of my home now, however possibly low levels of spores lingering.  About a week after that I went through some MAJOR stress at work.  My job where I have been for 10 years was threatened, I was up all night with stress clinching my stomach all night.  The next a.m. I was vomiting stomach acid.  Since then = HELL!  I have been on PPI's, H2 blockers, supplements, probiotics, Carafate to coat the stomach, another 2 week round of dyflucan for candida again (it showed up mild on organic acids urine test that Functional medicine Dr. ordered.  I had my gallbladder removed in Jan thinking that would clear up my stomach issues.  WRONG.  I have been checked for H-Pylori, multiple times, which is negative.  My husband is also having stomach acid issues, which is weird.  I have been getting non stop tonsil stones in my throat, feel like I am choking or cannot swallow.  I have had 2 endoscopy's, 1 colonoscopy, negative blood tests for celiac as well as negative biopsy.  However, I had a POSITIVE, enterolab test for gluten sensitivity.  53 was my result.  I literally have such bad stomach acid in the a.m., that I get cold sweats from the pain, I started a new job beginning of Feb. I was allowed to miss 5 days unpaid in the first 6 months, I have already missed all 5.  I am scared to death I am going to get fired, the stress of the new job isn't helping my stomach either.  Now they have also put me on anti-anxiety meds...so great now I am nuts!  LOL  Well yeah, this pain will do it to a person.  I would consider myself pretty healthy before this.  I never ever missed work like this in my life.  I had pretty tough for pain, I had a 9lb baby, my gallbladder out....it's NOTHING compared to this stomach pain.  I am also waking up every a.m. around 3-4 a.m. which was previously unlike me.  I had a total breakdown, and balled my face off this am again, begging God to help take this pain away.  I have literally wondered if this is what dying feels like, and sometimes have not wanted to go on anymore the pain is that bad  My first endoscopy in Jan showed erosive gastritis, my one this past week showed mild gastritis.  I don't get heartburn or any feeling of acid coming up in my throat  It's all major stomach burning pain.  I had been off gluten for about 3-4 days, then Friday ordered take out.  Baked cod, got home and saw that they gave me fried instead.  40 min away.  I ate it, probably very dumb.  Can gluten intolerance cause this stomach acid pain this bad?  If so, how long before I might get relief?  I would do ANYTHING to make this STOP.  Please help me!

[pricklypear1971]

Yes, gluten can cause this type of pain. So could other intolerances and probably many other things.

I had this. I was on antacids, Zantac, etc. and some other med that did really bad things to my body so had to stop it. None of them really helped.

What did help, while I was still on gluten, was teaching myself self hypnosis or meditation...I literally had to pull a "mind over body" trick. I had to visualize the pain leaving my body by going out through my arms/hands. I had to tell my body to relax and stop what it was doing. Got very good at it. Could do it in 10 seconds in a meeting.

I was careful about always diluting stomach acid with water. Lots if water. Carried around crackers (ha, gluten!) with me. Don't let your stomach get empty. Had to drop citrus/acidic drinks on empty stomach, etc. For me it was always the empty stomach...

So how do I connect this to gluten???

The only time I've had that type of acid/pain in recent history is 24 hours after eating out (and ordering gluten-free)...and I assume I got glutened. I do not screen out anything but gluten....at home or out...I am only gluten-free and strictly so.

And I know exactly the type of pain you're talking about, and only after being gluten-free 9 months and getting presumably exposed have I ever felt it again like I did in my earlier years.

It's terrible.

Get your medical records. Ensure you had complete celiac panels run, not just 1 or 2 tests. Did they ever biopsy you for celiac or just run blood and "look at" your gi system?

If they ran complete panels and took 4+ celiac samples then if try a gluten-free trial to see if it helps. If they didn't test you thoroughly and you want to pursue it stay on gluten and find a doc to run the tests.

In the interim drink water and meditate/visualize.

[bekkaz]

Yes, gluten can cause this type of pain. So could other intolerances and probably many other things.

I had this. I was on antacids, Zantac, etc. and some other med that did really bad things to my body so had to stop it. None of them really helped.

What did help, while I was still on gluten, was teaching myself self hypnosis or meditation...I literally had to pull a "mind over body" trick. I had to visualize the pain leaving my body by going out through my arms/hands. I had to tell my body to relax and stop what it was doing. Got very good at it. Could do it in 10 seconds in a meeting.

I was careful about always diluting stomach acid with water. Lots if water. Carried around crackers (ha, gluten!) with me. Don't let your stomach get empty. Had to drop citrus/acidic drinks on empty stomach, etc. For me it was always the empty stomach...

So how do I connect this to gluten???

The only time I've had that type of acid/pain in recent history is 24 hours after eating out (and ordering gluten-free)...and I assume I got glutened. I do not screen out anything but gluten....at home or out...I am only gluten-free and strictly so.

And I know exactly the type of pain you're talking about, and only after being gluten-free 9 months and getting presumably exposed have I ever felt it again like I did in my earlier years.

It's terrible.

Get your medical records. Ensure you had complete celiac panels run, not just 1 or 2 tests. Did they ever biopsy you for celiac or just run blood and "look at" your gi system?

If they ran complete panels and took 4+ celiac samples then if try a gluten-free trial to see if it helps. If they didn't test you thoroughly and you want to pursue it stay on gluten and find a doc to run the tests.

In the interim drink water and meditate/visualize.

 

Thank you for the reply!  I have tried the mind over matter deal, I am not that good at it.  They did run full blood tests for celiac, for the second one I had been off gluten for a couple weeks in between, I didn't know at the time that could make the test false.  I did have 2 endoscopy's, they took biopsy's in both,  both came back negative.  The second one for sure I know they took a few biopsy's...where should the biopsy's be taken from?  I am not sure if they just took one from every area. 

 

I seriously have no clue what is causing this.  I think it for sure got brought screaming to the surface from stress.  However, I don't think stress is what is keeping it going.  I am surely stressed feeling like this, new job, etc. but one would think that the "stress" wouldn't be there 24-7.  Back in Jan. I had allergy testing done, with needles, injecting under the skin like a needle prick.  I was positive 4, to Soy, Corn, Chicken and a 3 to milk.  No reaction to wheat.  Again, my enterolab is showing positive gluten intolerance.  I had allergy testing again this past Friday, skin prick again but different than the first time.  This time was little plastic sharp things that they kind of twisted on the skin.  They produced NO reactions to the soy, corn, chicken or milk.  I got overwhelmed at first trying to cut out so much.  Now, I am going to try with the big dog.  Gluten, I cannot for the life of me think of what else could be bothering me.  I have to start somewhere.  The thing now is, that I am back on PPI's, acid reducers, Carafate......how do I now determine if it is them that helps me or the gluten.  It's all so overwhelming.  I hate to cut gluten for the rest of my life if I really didn't need to (thinking about this is overwhelming in itself) for me I think that is why I wanted so badly for celiac to show.  So I had zero questions in my mind as to is it gluten or maybe it isn't.  Enterolab staff is telling me 100% get off gluten no if's and's or but's about it.  You are intolerant!  The casein from Enterolab was negative.

 

Interesting point on the empty stomach, because mine is empty a lot.  I am about anorexic looking for the weight loss, my stomach burns so bad, I have no appetite at times.  So I will try to take that advice and keep something in my stomach.  Mornings for me are 110% the WORST.  I wake up daily at 3-4 am, not really from pain in that moment...but it's like something is triggering me to wake up WHAM.  Then by the time I do get up at 6:30, the second my feet hit the ground.  Hello screaming acid, which will last for hours.  I spoke with a pharmacist today who told me to take like a zantac on top of the PPI.  She said the PPI stops the pumping of the acid, but if acid is sitting in your stomach the zantac will clear that up.  I didn't keep a very good record before but, the ppi's weren't helping....so I switched to apple cider vinegar and honey.  Which seemed to help way more than the PPI's.  I was also off gluten for a week or two.  Then one Friday I said, I am going to eat whatever I want....this is too much (that's when I was cutting out several things) So I went to McDonalds, got a chicken sandwich, fries....felt fine.  That night ordered fish fry, baked potato, cottage cheese.  Felt fine.  Next day, had some regular pasta, and a small piece of DD's pizza.  Within mins. I had major cramps, and was in the bathroom in pain 3x, within an hour after that I had explosive D.  The last thing in the world I want to do is take PPI's, acid reducer anything.  The weird thing for me in my mind is my husband, why him?  Why is he also having this acid problem.  He actually started prior to me getting my acid.  That's why I was bent that it had to be H-Pylori....nope.  Or something we were both exposed to somehow, like the toxic environment...that may have got this GI party started!  I definitely think he has a lactose problem, but maybe gluten as well.  No clue!

[pricklypear1971]

I think you need to come up with a strict elimination diet to eliminate the foods or groups you suspect and stick with it for at least a month.

And you've got to find some way to reduce your stress.

And eat. Having a constantly empty stomach from fear of eating will just make it worse if its acid.

And finally, too many stomach meds can actually cause surges in acid. Your body attempts to compensate and overdoes it???

Good luck.

[bekkaz]

I found out today talking with another nurse from my worthless GI Dr's office...that my biopsy showed high white blood cells in my small intestine.  This is consistent with my blood work over the past 2+ years, as well as my fecal test showing inflammation high white count.  They told me they think it could just be an incidental finding.  The ignorance of these medical people is mind blowing to me.  My first endoscopy showed gastric erosiion and inflammation, now my small intestine is showing it as well.  I said could this be gluten, she said probably not.  When we see celiac on the endoscopy it's HIGHLY noticeable, like no denying it.  LOL  I said I had this positive fecal test for gluten and am getting sick when I eat gluten.  She said and I quote....don't get all wacked over that!  They think I am now having anxiety and just need to pop some anxiety meds for 3 weeks, if that doesn't work, they'll shove some anit-inflammatory drugs my way.  This is hilarous and makes me FURIOUS at the same time!

[GFinDC]

Hi Bekkaz,

There are some natural medicines you can try for stomach issues.  DGL (mostly natural) and mastic gum are both good for some things.  They won't hurt you and might help.

Celiac disease is not an allergy, so skin prick testing won't detect it.  People can have both allergies and celiac disease at the same time though, that does happen sometimes.

You said your pain starts when get up from bed?  That's interesting, because I think often people with acid reflux sleep with their head elevated to reduce the chance of acid reaching the esophagus and causing pain.  Do you do that?   How about sleep position?  Do you sleep in the same position every night?  It might help to vary your routine and sleep on your right side some nights, left side, and back others.  That way stomach acid is more evenly coating your stomach instead of always in just one area.

There is a condition called non-celiac wheat intolerance that can cause symptoms similar to celiac disease.  But it is newly identified and they don't have any standard test protocol for it yet.  So the only way to know right now is to go off gluten for several months and see if it helps.