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Court L

Gastritis that just won't quit.... help!

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So I was diagnosed with celiac disease 3  years ago after I was having frequent diarrhea and dropping weight like it was nothing. I've eaten gluten free ever since and have had minor cross contaminations here and there, but otherwise very well managed. Fast forward to October of this year where I got married in Mexico. The day before my wedding I got incredibly sick....nauseous, lightheaded, fatigued, diarrhea, feeling like I needed to vomit but couldn't. I took some medication for the diarrhea and slept it off, chalking it up to too much to drink and possible cross contamination with gluten. Made it through the rest of the week without much issue. But when I got home, I noticed every time I drank even a small glass of wine or any alcohol, my stomach would be in knots all night with shaking cold chills and diarrhea. Feelings of nausea but never to vomit. I called my GI doc and got in right away. After receiving back clean blood work and no vitamin deficiences, his first thought was GERD, and put me on pantoprazole at 40mg until he could get me in for a scope to make sure there was nothing more. About 4 days in to pantoprazole I became very lethargic and had tingling in my fingers, anxiety attacks, major depression, dizzy spells, brain fog, shaking and waking up every hour at night and stabbing stomach pains. I lived with this for 2 weeks feeling like my body was shutting down, praying my upcoming scope would be more conclusive. However, other than some minor inflammation and a small hiatal hernia, I was in good health according to my scope. The only thing left is the biopsy that has yet to come back. Feeling frustrated and miserable, i started reading reviews on pantoprazole and saw others with similar side effects so I decided to cut it out and see how I fared. The next day I felt like a different person. I had energy again, felt happy, no brain fog. Just some minor reflux....until that night when I ate at a friends for New Year's Eve who is very gluten conscience. I had some turkey, fruit and dip, veggies and ranch, and a splash of soda to stay up. Well I left her house early in excruciating doubled over abdominal pain, cold sweats, chills, and spent the night on the toilet. Up every other hour with shaking nausea. So now i wonder if it was the first night without my protonix bringing my reflux back with a vengeance.... or is there more to this thing. I'm miserable. My appetite comes and goes and I'm tired constantly. Does anyone have any  insight?? HELP!!!

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9 hours ago, Court L said:

So I was diagnosed with celiac disease 3  years ago after I was having frequent diarrhea and dropping weight like it was nothing. I've eaten gluten free ever since and have had minor cross contaminations here and there, but otherwise very well managed. Fast forward to October of this year where I got married in Mexico. The day before my wedding I got incredibly sick....nauseous, lightheaded, fatigued, diarrhea, feeling like I needed to vomit but couldn't. I took some medication for the diarrhea and slept it off, chalking it up to too much to drink and possible cross contamination with gluten. Made it through the rest of the week without much issue. But when I got home, I noticed every time I drank even a small glass of wine or any alcohol, my stomach would be in knots all night with shaking cold chills and diarrhea. Feelings of nausea but never to vomit. I called my GI doc and got in right away. After receiving back clean blood work and no vitamin deficiences, his first thought was GERD, and put me on pantoprazole at 40mg until he could get me in for a scope to make sure there was nothing more. About 4 days in to pantoprazole I became very lethargic and had tingling in my fingers, anxiety attacks, major depression, dizzy spells, brain fog, shaking and waking up every hour at night and stabbing stomach pains. I lived with this for 2 weeks feeling like my body was shutting down, praying my upcoming scope would be more conclusive. However, other than some minor inflammation and a small hiatal hernia, I was in good health according to my scope. The only thing left is the biopsy that has yet to come back. Feeling frustrated and miserable, i started reading reviews on pantoprazole and saw others with similar side effects so I decided to cut it out and see how I fared. The next day I felt like a different person. I had energy again, felt happy, no brain fog. Just some minor reflux....until that night when I ate at a friends for New Year's Eve who is very gluten conscience. I had some turkey, fruit and dip, veggies and ranch, and a splash of soda to stay up. Well I left her house early in excruciating doubled over abdominal pain, cold sweats, chills, and spent the night on the toilet. Up every other hour with shaking nausea. So now i wonder if it was the first night without my protonix bringing my reflux back with a vengeance.... or is there more to this thing. I'm miserable. My appetite comes and goes and I'm tired constantly. Does anyone have any  insight?? HELP!!!

 Unfortunately I think you're going to have to wait this one out and keep testing.  I also tried Protonix and then later found out I did not have GERD. When I stopped the Protonix I used Pepcid and magnesium to control the acid rebound. It sounds like you might be getting some cross-contamination though.

For a while when my stomach was really bad I also could not drink any wine.

 The only other thing I can think of is the possibility that your pancreas might not be too happy as well. Did you have any wine on New Year's Eve?

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What were you eventually diagnosed with? And no I haven't had a drop of alcohol in almost a month for fear of the repercussions. According to my doctor they checked my pancreas and my gallbladder as well. No dice. It just doesn't seem normal to me to be in this much pain with cold chills from gastritis.

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I was originally diagnosed with duodenitis and a small hernia but then the pain then was usually mild with some nausea.  there was no mention of a stomach biopsy so I'm not even sure if I Had/have gastritis but my guess is probably yes.  I did have some BouTs of pain that were severe enough to wake me up in the middle of the night. One was after 2 glasses of wine. And my pancreas was also Fine.

 Things got worse after the Protonix for quite some time. Stabbing pains in the right rib cage, tender to touch area where pancreas/stomach is. I was originally diagnosed with all this back at the end of August and had been dealing with it about a month before. I still have some pain and a lot of pressure in my right rib cage. But it's not as bad as it was. I take DGL licorice 2x day now. The nausea is almost all, but not totally gone at this point.

On and off I get extreme feelings of a strange dizziness. The only time I got chills was when I got what I can only describe as a rapid gastric emptying of a meal.  do not ask me tHe Rhyme or Reason to that one because I still haven't figured out what triggers it. 

I had also been taking a low dose of xanax for several months  to deal with health issues and realized that you can get really weird symptoms, including nausea, inbetween doses as a form of withdrawl. So I got off of that slowly. 

I feel your pain. It is totally annoying and sometimes scary not to know what is causing all of this. 

 let me know if you figure out what it is.

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I had a horrible reaction to protonix.... never again. I'd rather let my stomach heal just by eating carefully than take that crap again. Wild side effects. I am sticking to easy bland foods for now til the gastritis goes down. I guess it's just shocking how much pain it causes!!! I would have never thought that much pain wasn't accompanied by a worse diagnosis. 

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7 hours ago, Court L said:

What were you eventually diagnosed with? And no I haven't had a drop of alcohol in almost a month for fear of the repercussions. According to my doctor they checked my pancreas and my gallbladder as well. No dice. It just doesn't seem normal to me to be in this much pain with cold chills from gastritis.

Last year during an extremely stressful time, I was diagnosed with gastrtis. For months I had horrible excruciating stomach pain, gurgling, hot sweats/chills, letgargy, and my chest was so tight I felt like I was having a heart attack.  Gastritis can cause some awful symptoms. 

Meds didn't help me at all, but stress reduction did, as well as dietary changes.

I have yet to be diagnosed with celiac but I know gluten makes me I'll so I don't eat it. I've met with cross contamination and had gastritis symptoms return.

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That's what I'm working on! Stress reduction and eating really easy right now as to not upset it. I guess it's possible there is nothing more to it than very painful gastritis. When I first got my symptoms it was the day before my wedding and right after my husband and I had gone through an extensive home renovation. Oh and in the meantime my company I work for was being sold.... so a very stressful time. Looking back it could possibly  just be stress induced and too much alcohol at the all inclusive resort 

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3 hours ago, Court L said:

That's what I'm working on! Stress reduction and eating really easy right now as to not upset it. I guess it's possible there is nothing more to it than very painful gastritis. When I first got my symptoms it was the day before my wedding and right after my husband and I had gone through an extensive home renovation. Oh and in the meantime my company I work for was being sold.... so a very stressful time. Looking back it could possibly  just be stress induced and too much alcohol at the all inclusive resort 

What blood tests were clean?  Both the TTG and the DGP?  It takes time to build up antibodies.  One week or two after an exposure may reveal nothing.   My antibodies were off the charts four weeks after a gluten exposure when I went into my GI's office.  Took me three months to feel good and another three to regain lost weight.  My symptoms totally changed from when I was diagnosed!  

Kind of "out there", but do you know that spackle and drywall contain gluten?  Did your remodeling include tearing down and building new walls (that lots of dust to swallow)?     Sure you did not get glutened at the resort?  Did you put ice or drink anything outside of the resort?  Maybe you are not dealing with gluten but a parasite?

i hope you figure it out.  Maybe ask for another TTG and DGP to rule out celiac disease related issues.  Let us know what your biopsy reveals.  Two weeks after a gluten exposure should be enough to see any celiac related damage, but any longer and you can heal.  Hopefully the timing was not off.  I hope too that they rule out SIBO, etc.  

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Blood work consisted of vitamins, complete blood count and gluten. Our home renovation was in August so I feel like I would have had symptoms earlier. Also, Mexico was where I was most likely cross contaminated at since my husband and I are very conscious here at home. That was over 2 months ago; I would think the antibodies would be here by now. However being in a foreign concerns me as well for other reasons. I too have wondered about a parasite or bacteria growth, but I guess I just won't know until the biopsy comes back. I'm going to call my doctor first thing tomorrow to see if anything has come back yet. This is the same GI doctor who knew instantly it was celiac disease 3 years ago so I have faith he will figure this thing out. For now, lots of yoga and healthy eating to help this pass the best I can. 

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lol, cycle lady beat me to the wheat in drywallmud...  But, PPIs should never be stopped cold turkey! except for a true allergy situation.  protonix come in a 20 mg tab, should have started with that and then gone every other day, and then stop......

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So my biopsy results from endoscopy are back and they were clean. No h pylori, nothing. I have been feeling better but tonight I must have had something my stomach wasn't a fan of. My doctor is starting me on a general antibiotic for possible overgrowth of bacteria common with celiac disease... which I found surprising since he found nothing in the biopsy. The next step is stool samples and a scan of my small intestine :/  still not taking a PPI because I'm scared of the side effects. Should I try another???

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I was shocked to have a recurrence of stomach pain after my gall bladder was taken out.  I was diagnosed with kidney stones.  That's when I discovered that stones less than 2mm cannot be detected even by MRI.  Since then I have avoided oxalates in my diet.  That means green beans, carrots, potatoes and yams or sweet potatoes.  There are others on the internet.  Maybe that will help.

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6 hours ago, ironictruth said:

My h. Pylori was negative too. The bacteria is probably SIBO. Usually diagnosed by breath test. Which I happen to be sitting and waiting for myself as i type.

I hope they figure it out!  You have been through so much!  

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So I have now lost 7 lbs in two weeks and now the anxiety is starting to really kick in. I am getting scared. I'm eating small meals throughout the day and at night time my stomach acid wakes me up and gives me the chills and shakes. Loss of sleep is just furthering my worry and stress. I had two days of solid bowel movements and today diarrhea and that caused another drop in weight. I have my GI doctor on speed dial and thankfully he is super sweet and understanding but I am growing impatient. The antibiotics need a prior auth from my insurance so that could take a few days more and I am tired of waiting to feel better. I am taking a gluten free probiotic but obviously it's not doing much. They still have me on carafate from when I went to the hospital and I am not taking a PPI anymore. Waiting for my stool sample kit in the mail. Any suggestions are more than welcome. 

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When did you start the Carafate? Why did you start it? It sounds like the biopsy did not show inflammation? I was on that drug as well and bagged it. It can cause tummy troubles which is counter intuitive considering it is used to treat ulcers. It is hard to determine what are initial symptoms and what are side effects of drugs you are taking. For example, the Xanax I was on caused dry eye, which in turn caused stabbing and shooting eye pain which I had never had in my life. I had no idea what the hell was causing it until an eye doc told me.

Carafate:

Less serious side effects may include:

  • nausea, vomiting, upset stomach;
  • stomach pain;
  • constipation, diarrhea;
  • mild itching or skin rash;
  • sleep problems (insomnia);
  • dizziness, drowsiness, spinning sensation;
  • headache; or.
  • back pain.

 

Magnesium Oxide at bed can help with acid as well as anxiety. But talk with a doc first. Supplementing with some vitamins can mess with other levels if not done properly. You are probably safe with up to 400 mg of Mag though temporarily for a couple of weeks.

Looking back on your posts, it certainly sounds like you may have had a gluten exposure. Again, I am not dx w/ celiac, but others on this board report variations in healing time, days to months. Then you added and took away Protonix and the Carafate which might upset the natural pH in your system. You also had some veggies New Year's and I can tell you, that was the first thing that took my nausea from a 3 to a 8 back in July. A lunch with raw veggies. Too hard on the already sensitive tummy.

Can you try to have a very bland diet for a few days? Eat cooked veggies that are high in vitamin A, like mashed sweet potatoes and steamed carrots. Drink coconut water. Steer clear of a lot of sugar. Bland fish such as tilapia. Avoid coffee. I do use a brand called Rich Rewards which is brewed with green beans and is lower acid and easier on my stomach.

I feel badly for you, and literally feel your pain. Let us know how you are doing.

 

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@ironictruth

Excellent advice!!!! When I take a gluten hit (it has happened twice and I still do not know the source, but it has been documented by my GI).   I eat super safe and totally bland foods.  Simple stews and soups (think crockpot).    Everything well-cooked and unseasoned.  Usually just fresh veggies and meats/fish/poultry.  No fruit, nuts or grains.  I eat this until I feel better (historically, two weeks) and gradually add back other foods.  By three months I am usually fine.  

Sounds boring, I know.   I still make normal gluten-free meals for my family, but I resist eating  them after a glutening.  Actually knowing that my gut is going to hurt for at least two hours after eating anything is incentive enough!  I also found that I do best putting off food for a few hours in order to get work done is best for me.  That means a few hours without pain.   

Weird, because anemia was my only symptom at the time I was diagnosed.  No noticeable gut issues except for a few intolerances.  If I avoided those, I was fine.   After my glutenings I visited my GI.  We were both sure I had SIBO or something else, but elevated antibodies revealed the true cause -- gluten!  

Drugs?  I avoid them unless it is life threatening.  I have reacted to so many (anaphylactic).  I just tough out the symptoms.  

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11 hours ago, Court L said:

So I have now lost 7 lbs in two weeks and now the anxiety is starting to really kick in. I am getting scared. I'm eating small meals throughout the day and at night time my stomach acid wakes me up and gives me the chills and shakes. Loss of sleep is just furthering my worry and stress. I had two days of solid bowel movements and today diarrhea and that caused another drop in weight. I have my GI doctor on speed dial and thankfully he is super sweet and understanding but I am growing impatient. The antibiotics need a prior auth from my insurance so that could take a few days more and I am tired of waiting to feel better. I am taking a gluten free probiotic but obviously it's not doing much. They still have me on carafate from when I went to the hospital and I am not taking a PPI anymore. Waiting for my stool sample kit in the mail. Any suggestions are more than welcome. 

Goodness, this sounds tough.  Big ((((hugs))))

I agree with others that for now eat very bland, easy foods.  When I've been glutened I go straight to chicken cooked all day in the crockpot, boiled potatoes, very well steamed carrots or asparagus.  Maybe rice and bananas.  But that's it.  I will eat that for days until things calm down.  I also drink ginger tea (just a slice of ginger root boiled in water) or peppermint tea and find both soothing.

I would wonder as well about gallbladder functionality and gallstones.  Kidney stones as well.  Those sent me to the ER last year...extremely painful and had chills, etc.  I'm not sure what else to suggest.  I hope that something gets figured out quickly so that you can feel better!

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Hi Courtl,

If you think you have sibo, you can try changing your diet to make it harder for the bacteria to multiply.  What you could do is avoid all sugar and carbs.  Bacteria love that stuff and multiply like crazy when  they have lot of it to eat.  Instead eat meats, veggies, nuts and eggs.  Rice is very carby and so are potatoes, so avoid them.  Starve those little suckers out! :)

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On 1/4/2017 at 9:52 PM, Court L said:

 

 

HOME RENOVATION?  Did you inhale dust from cutting any kind of manufactured wood product like plywood or any drywall?  These are glued products, these glues can be wheat derived, and if you inhaled any of the dust ...

 

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But if that were the case and it were gluten.... why were my numbers not raised???? Also, I had an MRI with contrast and my test results were apparently perfect. Nothing abnormal to be found, same with the scope and all of my blood work. I get chills throughout the day when I eat and feel extremely full and bloated after I eat, most days. That's what is so frustrating! It's not every day anymore. It's hit or miss. I actually was feeling a million times better until my MRI. I think that nasty contrast in combination with not eating til 330 that day sent me for a loop. Does anyone have any suggestions?? I have gained a few pounds back but am still having diarrhea every few days....then other days it's normal.... I am keeping a food log but can't seem to find a correlation. 

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