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

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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

 

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  • Posted

    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.

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    • Posted

      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.

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    • Posted

      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....

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    • Posted

      Hi pippa. Thanks for the tips. I will try reading if I can't back to sleep. I'm a computer guy so I sometimes I get up and do something on the computer but I try to avoid that cause I find that I get sucked into things and then stay up longer than I should. I have also tried listening to meditation audio files to go back to sleep. I think that sometimes works.

      Unfortunately I am lactose intolerant so I'm too scare to try a glass of milk before bed but maybe I will try some lactose free milk in a couple of weeks when I get past the first 4 weeks of the elimination diet.

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    • Posted

      Hi mary. I would appreciate it if you could send me a private message with the book name.

      Diet is something that is really confounding me at the moment. Between the elimination diet and making adjustments based on how I feel and trying to stay close to the principles of diets like low FODMAP, Fast Tract and Dropping Acid, it has been tough to find foods to eat.

      For example at this point it seems that anytime I have fruit (and I am pretty much only sticking to higher PH fruits like bananas, melons and bosc pears) my throat gets irritated. Once it gets irritated it takes awhile to go away so now I am eating less fruit. It seems like I always have to take away more than I can add.

      I added back rice and chicken broth in the last couple of days and something is giving me a weird slightly metallic taste in my mouth. I don't know if it has anything to do with the foods or if I am refluxing more or what.

      I am also perplexed a little by the cough and breathing issues. I tried paying more attention to it more the last couple of days and I noticed that the coughing starts up more noticeably sometime after dinner but possibly only if I am sitting around. I went for a 40 minute brisk walk and seemed fine. When I sat down at the computer I noticed I was coughing more and trying to breath in deeply seemed difficult. Like I could only suck in air half way. I thought it must be something to do with reflux but I don't know. When I lay down (on my left and slightly elevated) I noticed that I could breath in totally normal.

      During the day my I seem to be able to breath OK but not as good as when I am lying down. Coughing is also minimal but may happen more if I have slight throat irritation so I don't know how closely the breathing and coughing issues are related.

      I know I shouldn't worry so much about these more minor symptoms but I did have a big flare up of throat irritation last week that led to congestion and more coughing so I just want to be careful to avoid that again. I am wondering if allergies are involved somehow.

       

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    • Posted

      Coughing can be a sign of acid reflux.  I cough like mad with reflux and find that OTC antacids help along with milk.  Once you are finished the elimination diet, see if lactose free milk helps you.  In the UK, I don’t feel the desire for sleep and go to bed very late.  I tend to do a lot of pottering about, gong trhough emails and writing poems and posting them onine. I have Asperger syndrome and find I am on the go 24/7.

      In Italy, I am out on the beach until the evening and all the waliking, swimming and strong, magnificent sunlight uses up my huge energy levels so I am more ready for sleep at night.  However, if my friend facetimes me,we can be chatting to 4 or 5 in the morning!

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    • Posted

      Thanks pippa. I find it odd that I cough more in the evening between 8 and 11PM even though that is when you would think my PPI would be at it's strongest. I feel like it is related to throat irritiation though so maybe the lack of sufficient acid reduction the few hours earlier irritates my throat enough to cause the problems for the next few hours. As soon as I go down for bed it all seems to stop though. Do you cough when lying down?

      Last night I had problems sleeping again and ended up looking up at some more tips on sleep and diet and there was some mention of naturally increasing melatonin by avoiding unnatural light, computer screens etc.. I wonder how much that affects the differences you feel between being the UK and Italy. I will try avoiding my computer tonight and do some reading the natural sunlight.

      I also read that you should have enough tryptophan foods at dinner along with carbs. I will have to look into that more. A lot of the suggested high tryptophan foods I have eliminated for one reason or another. Bananas which I just eliminated in the last few days are supposedly good for tryptophan and melatonin.. I wonder how much that has to do with the rough last 2 nights.

       

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    • Posted

      Funnily enough, I was coughing a lot in bed but now I’m up, it’s calmed down. In the UK, I google at lot at night on the ipad which has a strong, bright screen. In Italy, I am doing a lot more physical activity such as housework in the morning, pulling up blinds, sea bathing and long walks on the beach followed by more walks after dinner.  All this tempers my boundless energy and I am too tired for the ipad at night so I go to bed at a more reasonable hour.
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    • Posted

      That's great that you have so much energy!

      Funny enough I don't seem to lack energy either. It must be the cleaner diet. It is other things slowing me down though like the esophageal and throat pressure, chest/rib pains and slow digestion. Trying to work in a schedule to do more than short walks is tough cause I need a time when my stomach is empty enough and I am in a location to do something I can handle. Dropping and doing some push ups or going for a run isn't an option anymore. sad

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  • Posted

    The upper abdominal pain and vomiting sound like symptoms of gallstones....but that should have shown up on an ultrasound or CT scan. Perhaps have a HIDA scan to test gallbladder function. The lump in throat and burning in stomach sound like acid reflux in which case PPIs and change in diet should help.
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    • Posted

      I will ask the doctor about my gallbladder. The only time I vomited was the first incident in June 2017. Since then it has primarily been burping and stomach burn and aches till the big breakdown in mid April.

      PPIs help with the stomach burn but it seems that it wears off just a bit before the 24 hours is up. My diet has changed drastically for the last month (on the elimination part of a hypoallergenic challenge diet) or so but I still get the stomach burn around the 22 hour mark. I am still trying to figure out what is affecting me or not cause the symptoms and when they happen aren't always consistent. Neither are my meal times and quantities though. But right now my staples are:

      chicken (usually roasted)

      ground turkey

      fish (usually salmon)

      white rice (sometimes brown)

      quinoa

      spinach (steamed)

      sweet potatoes and yams

      milled flaxseed

      hemp hearts / hemp milk

      chicken bone broth

      off and on as I am trying to figure out if they are related to an irritated throat, bloating etc.. are:

      gluten free quick oats

      bananas

      cantaloupe

      honey dew

      blueberries

      carrots

      honey

      maple syrup

      watermelon

      puffed rice cakes

      salt

      cinnamon

      organic vegan protein powder mix

      Things I have tried and decided to avoid as much as possible:

      apples (major sore throat, metallic taste in mouth and nasal congestion. possible allergic)

      broccoli (bloating)

      celery (stomach pains - maybe)

      cucumber (stomach pains - maybe)

      kiwi (irritated throat - maybe)

      bosc pears (bloating)

      Things I want to try sooner than later in the challenge part are:

      eggs

      soy milk

      gluten free soy sauce

      almond milk

      lean beef

      lean pork

      Other things I am curious about to see if they are triggers but kind of scared to try:

      chocolate

      anything with sweeteners

      onions

      garlic

      popcorn

      tortilla chips

      gluten free bread

      beets

      Probably more. Diet has been the hardest part to figure out because sometimes I don't if I am under the ill effects of something else I ate previously or some other factor, or things I tried were when my pains in general were worse and likely my body more sensitive, etc. I am also paranoid about eating the wrong types of food since I don't actually have a diagnosis yet after a year other than I am lactose intolerant. Should I eat low acid, low fodmap, low fermentation potential, etc..?

      I am trying to take it slow but with the limited foods it makes it hard to make and eat 5-6 meals a day on the go without getting hungry, bored or running out of ideas (I'm not a great cook). Weight loss is becoming a bigger concern though. I dropped over 20lbs in the last 2 months but I think I might be stabilizing by increasing my calorie intake a bit but it seems to be coming at the cost of side effects like more throat irritation and disturbed sleep cause my digestion seems slower or my stomach has shrunk a lot.

      I visited a new doctor today who said I might have gastreoparesis but didn't want to add anymore meds into the mix yet which I am OK with for now.

       

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