Help figuring out what to do. GERD, LPR, IBS, etc.. symptoms.

Digestive health
1

I have really been struggling with GI issues in the last month and am looking for help while I go through the medical process here in Canada. Here is my story. Sorry if it is long and detailed. I highlighted the parts where I feel there was a big turning point and my main concerns.

I'm a 43 year old male living in Canada and a year ago I was pretty fit, lighting weights and eating somewhat healthy. I was considered healthy by my doctors and I felt good. In late June 2017 I woke with very bad upper abdominal pain. I had fever, vomitting and nausea. Even a few specks of blood in my vomit. I went to emergency and they did some blood work, x-ray and an ultrasound but didn't finy anything wrong. They sent me home with 2 weeks of pantoprazole. In about 24 hours I was on my feet again and mostly better but I was burping a lot. Like anytime after drinking water.

A couple of months later I noticed that I was getting small but concerning stomach aches (dull feeling) and still burping. I went to my doctor and he said it was likely acid reflux caused by something and to go on PPIs (40mg pantoprazole) for 6 months to see how it goes. He also tested me to for H. Pylori which came back negative

3 months after of trying to live my normal routing (a bit less eating and working out and reducing things like dairy) I had another pain attack. Not as severe as the first one but noticeable. I went back to my doctor and he suggested I get another ultrasound and tested for lactose and gluten intolerance. I came back with a diagnosis of lactose intolerance but was not celiac and ultrasound was fine.

A month and a half later I had another attack (likely from overeating since it was around the holidays) and went to the hospital. This one passed after about 16 hours. The doctor there told me to double my PPIs for 2 weeks and take restoralax (laxative that draws water to your bowels) for a month. I felt better for awhile. A month and a half later I finished my course of PPIs. I was feeling good and wanted to come off it.

He said I could try and didn't think I needed to ween off the PPIs. The first 2 weeks went good. I was still avoiding dairy (occasionaly lactose free cheese and milk or a try with something with lactase pills) but I was eating more whole grains. And also my weakness, dark chocolate. A lot of burping came back so I went back to the doctor. We had me try 2 weeks on dexilant 60mg. I felt good for those 2 weeks but I also cleaned up my diet.

I tried without PPIs after that and was doing OK till I went on a vacation to NY. There I ended up eating more carbs (I was trying to avoid gluten in case I had non-celiac gluten sensitivity) and dabbled with a bit of pizza and ice cream. By the 3rd day I was getting burps again. My doctor prescribed me some dexilant (generic this time) and told me to take it if I had any problems. I took it for 2 days and stuck to a pretty simple diet of chicken, rice, salad and fruit for most of the rest of the trip. On the way back I started getting little bubbling type pains in my gut. Often lower left but sometimes in other areas.

When I returned I noticed that ginger helped so I was regularly consuming ginger anytime the pains popped up. I was feeling pretty good and tried going to the gym a little more. On one trip I tried doing some light bench presses and felt a uncomfortable feeling of gurgling just before my chest. I then stopped everything. For the next week I felt a little uneasy in the abdomen and went back to my doctor. He put me back on the dexilant (generic 60mg) and said all the problems were because I stopped the meds. He also send me for tests for kidney function which came back ok. 

**A few days later (about 3-4 weeks ago) I had another pain attack. This one was not as severe but lasted several days.** Since then I have been on a rollercoaster of mostly downwards health. I have tried really cleaning up my diet which I am not sure helps. I am mostly on bananas, chicken, spinach, coconut yogurt, berries and carrots. Symptoms in order that they started to appear/worsen have been:

- light pains popping up randomly in my lower abdominal

- discomfort in my lower abdominals when sitting.

- a feeling of acid reflux shortly after cutting out most carbs. (Also seemingly after crossing my arms across my chest one day)

- light upper abdominal pains that appear rapidly for short periods. Anywhere from both sides under the ribs to middle of chest or slightly lower.

- occasional light headedness. Usually goes away shorty after eating.

- Going from discomfort when lying on my back or right (could only sleep on my left for months) to pain when leaning back. This lasted for a few days. It has subsided a lot after avoiding drinking fluids 2 hours before bed and sleeping elevated with a wedge.

- a light cough and globus feeling. (after I switched back from dexilant to pantoprazole.

- disomfort

- lower energy and depression

- this morning I woke up with a bitter taste in my mouth. (note I just tried reducing my PPIs to once a day the day before)

In the last month I have tried:

- being much more strict with my diet though I am still experimenting with what may trigger things.

- sleeping elevated

- meditation

- After significant chest pain a week ago when accidentally rolling onto my back in the morning I went to emergency. They checked my heart and lungs (blood and xray) and said it was OK. The doctor then switched me to pantoprazole twice a day.

- adding things like throat coat tea and vitamin B12.

- I also just had a CT and am waiting to discuss results with my doctor next week.

- reducing my pantoprazole to once a day.

What I currently feel:

- minor lump in my throat and light cough. Seems to get much worse later in the day. Not sure if it coincides with when I take my pantoprazole. I am taking it right before dinner so I still have some acid reduction during night tine.

- a slight burning feeling in my stomach every so often during the day. It doesn't seem to go high up enough to feel like heart burn or burn my throat.

- slight lower abdominal pains and the burning pains in my stomach when doing something like riding a stationary bike for awhile.

-** low energy. Even though I don't have very bad pains I feel low energy, can't be happy and feel anti-social. I feel like this is because my lifestyle suddenly came to a dead stop a month ago and I don't know if I can ever go back to it, even in a smaller capacity. Everytime a little pain in my abdomen pops up it completely ruins my mood. With all the pains and issues I had since last June, it hardly affected my mood until the several day pain episode that happened a few weeks ago.**

I am looking for any advice that may nudge me in the right direction as I haven't been able to get much direction from doctors yet. I have not been able to get referred to a GI doctor yet.

I feel like i may have:

- hiatal hernia (from weightlifting) but my doctor seems to constantly think it is a low possibility and never tests for it

- SIBO, H. Pylori and/or gastritis from PPIs messing with my digestive system

- Some kind of vitamin, nutrient deficiency from the reduced diet.

- LPR

Thanks for any advice you may have.

Peter

 

2

I'm wondering if you might have a stone stuck in your bile duct.  You should ask your doctor for a hyda scan.

About 5 years ago, I started getting acid reflux for the first time.  I go to an alternative practitioner as well as a medical doctor here in Canada.  THe alt pract explained to me that as we age, we often produce less hcl (hydrochloric acid).  Medically, when you have acid in your throat, they treat you with a PPI thinking you have too much acid, when often it's the opposite but with the same symptoms.  You need hcl to open the sphincter into your small intestine.  If you don't have enough volume of acid in your stomach, your stomach bulges and the acid you do have travels up your esophagus.  The fix is to take hcl (betaine) from a health food store right after a meal.  But not be on a PPI at the same time.  If you get a burning in your stomach, that can indicate that you don't have a shortage of hcl.

Also I did a good quality liver and gallbladder cleanse at that time.  Within about 2 days, the acid reflux went away,  Super thysilyn from Nature's Way along with dandelion and a probiotic and fibre are what I use.  You may want to do some reading.  I find you have to educate yourself because medicine has really changed.  It's more about masking symptoms now than getting to the root cause.

3

Ask for an endoscopy to check for gastritis.  The other possibility is GERD.   Your current symptoms may suggest one or both of these conditions. Discuss these possibilities with your doctor next week if your CT hasn’t shown anything.

4

Thanks pippa. I will definitely ask about gastritis and gerd.

I was thinking of asking to get checked for H. Pylori again (and SIBO). H. Pylori was negative back in September but I didn't have any pains like this till early April.

5

A hyda scan may also be useful to see if you have a blockage in your bile duct that can't be seen by ultrasound.  I sent you a much longer reply but it is still being moderated.  Hopefully it comes through soon.

 

6

The more tests you have, the more likely you will get a diagnosis.

7

Thanks Beverley. I haven't heard of a hyda scan. I will look it up!

I look forward to seeing your longer reply.

 

8

Hi peterm8

I noted from your post you do weightlifting is this a regular activity? Weightlifting is very strenuous and can impact on your adrenals and cortisol. Strenuous exercise can cause the adrenals to release high levels of cortisol which in turn will cause gastro problems. Also, i noted in your post you are taking B12, B12 will not absorb through the gut, intestine and ileum if you are taking PPI's they will block B12 absorption. You will have to take B12 sublingually under the tongue, by a B12 Spray in the mouth or a skin patch, there are also B12 nose sprays..

9

Thanks Beverley. I will look into gallbladder issues and cleanses.

Right now I am trying to ween off of my PPIs. I went from 60mg dexilansoprazole (for a few days) to 40mg pantoprazole twice a day and am trying it once a day. I noticed I immediately am getting a lot of reflux it seems. I wake up with some bitter/sour taste in my mouth (even though I take my PPI around 5:30PM, sleep elevated etc..) and am noticing pain in my solar plexus area more often.

It is really freaking me out that I am damaging my oesophagus so I am thinking of going back to twice a day or PPI in the morning and zantac in the evening..

10

Hi Mary. I don't weightlift anymore. It was gradually decreased since last year due to discomfort and in the last month I have completely stopped.

I am taking vitamin B12 tablets that dissolve under my tongue. Would that work?

11

Hi peterm8

Yes sublimgual dissolve under the tongue B12 supplements should be ok....also have your vit D checked low levels can cause gastro problems also.....

12

Thanks mary. I was taking a calcium supplement every other day (approx) which had a bit of vitamin D. But a few years ago my doctor told me to take some vitamin D cause I was low after an annual checkup. Likely things haven't gotten better lately since I cut out milk and lot of other foods. I will ask my doctor about it and consider a supplement.

13

So a bit of an update and some questions. I feel like the reflux is starting to get under control with 2x pantoprazole a day. Yesterday I hardly felt any burning sensations and today I only did after eating a somewhat questionable meal that had a bit of tomato sauce and other spices I wouldn't normally have (as in wouldn't have in the last month). I actually seemed OK with it for awhile but then had a kiwi 5 minutes later and that set off some reflux almost right after. Not sure if it was the mix or being too full but I had a kiwi yesterday and seemed OK with it.

In any case today was filled with more little pains in random places again so while reflux is down and my mood is better, the increase in frequency of the mild pains is a little concerning. I am attributing it to trying to expand what I eat a bit more.

The most concerning thing right now is that throughout times of the day I get either a slight cough, dry mouth or a bit of a short breath. I am not sure what is causing it but I suspect it is the pantoprazole. I am just worried that it might have a long term affect so I will be asking my doctor about it. Has anyone else noticed similar side effects? Or is it more a symptom of my gerd getting worse?

14

Hi peterm8

Check the Information Leaflet that came with the Pantoprazole for side effects...

15

So after seeing my doctor today he was more concerned about the results from my IBD marker tests than any acid related problems. The 2 blood tests came back ok but the stool test (Calprotectin) came back with positive results. He said my Calprotectin levels were about twice what was normal. I am not sure if that is low, medium, high or whatever but it was enough that he wants me to see a GI and get a colonoscopy.

Also after describing some of my other pains in the upper area, he was wondering about my pancreas but previous tests (ultrasound in January) and CT last week didn't show anything. He suggested I try some pancreatic enzyme supplements which I will try..

He didn't seem to think that PPIs should have much affect on my system since I have been on them less than a year but I am still not so certain. I found a research paper that seemed to find that PPIs can inhibit the release or production of pancreatic enzymes but it isn't something that I have seen talked about before in all the warnings about PPIs that you usually see.

Anyhow, at least I will get to a GI. Hopefully soon. I have dropped 15 pounds in the last month which is more than I thought. I figured it was due to eating less and cutting out a lot of fats and carbs but now I am wondering if malabsorption is also contributing to it. My doctor is trying to use the weight loss issue to escalate my case and get to see a GI faster.

 

16

Hi peterm8

Glad to hear you are getting somewhere and progressing toward a diagnosis. I do hope you can see the GI soon...keep posting...best wishes..

17

Sounds like your calprotectin levels were high if you were told they were twice what is considered normal.  Your doctor is suggesting a colonoscopy to look for IBD which causes high calprotectin.

18

So it's a month later and I did finally get to a GI but the saga continues. If anyone wants to know the details I will post what has been going on.

In short, I still don't have a diagnosis but I have stabilized quite a bit. I still have a lot of symptoms. The main problems currently are:

- Can't sleep through the night. I wake up every night after a 3-5 hours of sleep. Sometimes I can go right back to sleep, other times it takes an 30-60 minutes. I don't wake up with pain anymore so I am not sure what is waking me.

- Still have issues with food. I am on mostly an elimination diet but it is pretty restrictive right now because symptoms keep popping up and I don't know what's causing them. Figuring out food and trying to eat enough is a big problem. I have dropped >20 pounds since this started in mid April.

- There is still some kind of reflux/acid type of problem. I take 60mg dexilant around 5:30PM every day so I get nighttime protection. Around 3:30PM or so, I start noticing a burning in my stomach and usually a light cough (few times an hour?) and a slight feeling of having a harder time breathing (although my breathing seems fine) starts up. This is gone by morning.

There are a bunch of other little symptoms like butt muscle pains, back pains, occasional throat irritation, etc.. that seem more like irritations than something that worries me too much these days.

The GI doctor didn't seem to be concerned with any of my tests including the calprotectin test. He said at the level I showed, they don't do anything. My bowel/abdominal pains are pretty light currently but still pop up daily for seconds at a time. He suspects I ate something that made my system go crazy and paralleled it to an experience he had. He had reflux and pain lying down and bending over too but he had diarrhea instead of stomach pains (cramps). He said it would likely take months of recovery assuming nothing serious is wrong but he wasn't sure how much better I would get. In particular I asked him about the reflux related issues because that is want is worrying me the most.

The next step is to do an endoscopy next month. He didn't think I needed a colonoscopy yet because he said my abdominal CT looked great.. He did however prescribe some Elavil (antidepressants) to calm down my gut nerves. I took them for a week but started tapering off a couple of days ago because I don't think they are worth the side effects. Especially since I don't have significant abdominal pains or diarrhea. He also recommended taking benefibre even though I am pretty regular.

So at this point while I wait I am trying to work on three main things:

1) What is the deal with the 3:30PM issues? I feel the burning in my solar plexus area but I don't feel reflux but I get the cough and slight chest pressure in the evenings. I am assuming LPR. Should I try to add some extra suppression around 3 or 3:30PM to avoid it? Will that help my healing? I am hoping to eventually reduce or eliminate the PPIs. I am wondering if my body is over reacting the the PPIs wearing off around the 22 hour mark? I am scared to try weening off at this point though because I still have symptoms.

2) How can I prevent further weight loss? Eating more is difficult cause I feel full faster. Lately I have been wondering if I have delayed emptying but maybe the Elavil was causing it. In any case, even before the Elavil if I ate more than my usual smallish meal for dinner I would go to bed still feeling something in my stomach even if it was 3+ hours later. Sometimes waking up after a few hours of sleep and still feeling like there was food in my belly.

3) How to sleep better. I know a lot of people with LPR reflux at night and that wakes them up. I don't wake up with pain or choking or coughing though. I used to think it was discomfort from the bed wedge but I swapped that out for a Medcline which is pretty cozy but sometimes my hip is sore when I wake up. Most of the time I just sort of find myself awake for seemingly no reason. I am definitely not nearly as active anymore by I try to do at least 30 minutes of walking or light riding on the stationary bike a day. I can't do much else because I get costochondritis type pains if I do things like light cable pulls or weights.

Any thoughts would be appreciated.

19

I wouldn’t worry too much about your sleep pattern.  Everyone is different with the number of hours of sleep they need.  If you wake up early through the night,  try reading for a while until you feel tired and ready for sleep again.  Try a glass of milk befire bedtime which is very good for calming GERD.  My sleep pattern is very different in Italy during the summer than it is in Great Britain.  If anything my Italian sleep pattern is better.

Don’t worry about your exercise regime either; just do what you can and be happy with that.  Stressing a lot can cause acid reflux and other GI trouble.  I have IBS and GERD which were both stress related and I have decided not to stress about these conditions and this has kept my symptoms at bay.

20

Hi peterm8

It seems your Circadiian Rhythm sleep pattern has been upset by your diet. To get a good Circadian Rhythm you have to eat proteins during day up until 3-4pm then eat healthy carbs. You have to eat this way to get your normal sleep rhythm working properly. If you do start the Circadian Rhythm diet which will be what your already eating but proteins during day and healthy carbs and a bit of sugar from late afternoon. There is a book on the Circadian Rhythm diet which i can't name here..but can send in private message with your permission. This worked for me i now sleep good....