Gastritis or Glutening - Slippery Elm

[Whitepaw]

LOL, re: trousers vs. pants.   Here in the US, trousers are a specific kind of pants/slacks, with a looser fit and often with pleats in the front. 

 I also read that Vit D helps digestion;  can't recall the links, but likely within Gundry's writings about lectin.   My Dr. just told me to resume 2000 IU per day, and I do think it's made a slight difference.

Have also read that bone broth is helpful, its gelatinous nature supposedly coats the stomach.   I know bone broth has not been formally studied much, but again, probably can't hurt and might help.

[cristiana]

On 7/22/2017 at 1:45 PM, Whitepaw said:

LOL, re: trousers vs. pants.   Here in the US, trousers are a specific kind of pants/slacks, with a looser fit and often with pleats in the front. 

 I also read that Vit D helps digestion;  can't recall the links, but likely within Gundry's writings about lectin.   My Dr. just told me to resume 2000 IU per day, and I do think it's made a slight difference.

Have also read that bone broth is helpful, its gelatinous nature supposedly coats the stomach.   I know bone broth has not been formally studied much, but again, probably can't hurt and might help.

That's interesting, thanks.  I will look into both - and I believe our forefathers' habit of boiling up bones was good for the joints, too. 

I wonder if you could tell me, did you lose much weight through all of this? I have lost about 4-5 pounds since this began, and I don't really like losing weight when I'm not trying to.

Mind you - some days I just can't eat, after lunch yesterday I couldn't face anything much at all.

 

[Whitepaw]

32 minutes ago, cristiana said:

 

I wonder if you could tell me, did you lose much weight through all of this? I have lost about 4-5 pounds since this began, and I don't really like losing weight when I'm not trying to.

Mind you - some days I just can't eat, after lunch yesterday I couldn't face anything much at all.

 

I've lost 3-4 pounds.   It surprises me, as I would have expected to lose more, considering how limited my diet has been,  how sick I was since early May, and now walking 35 to 45 min. after dinner.   I think it's the increased gluten-free bread and shortbread cookies.  I've eaten more of these as they settle my stomach and are safe when I'm not sure what else will work.   I think I may also be having more sodium, so there may be a bit of water weight.

I am actually doing better.   I've been on Famotidine 20 mg., 2x daily for about 9 days, and added Vit D a few days ago.   I've been able to drop one of 4-5 stacked pillows at night, and will try dropping one more tonight.   I am down to Tums (1500 mg.)  around 3-4 a.m. for mild heartburn / upset stomach, and again when I get up.   Not much else, maybe occasional simethicone.    

i tried returning to a salad at dinner, just lettuce, tomato, and onions, but seemed to have more trouble overnight, so quit.  I'm mostly eating an egg with toast, well cooked sweet potatoes/mixed veggies, tuna, some salmon, hamburger, chicken, Ian's fish sticks, bone broth, Schar's breadsticks and shortbread, some soy milk or macadamia milk, and the bakery gluten-free bread.  

[cristiana]

Thanks so much, Whitepaw.  I'm very interested to see what you are eating as my diet is becoming rather dull!

I'm just beginning to try tapering the omeprazole as it really disagrees with me and I've been taking it for three weeks so far.  So today I haven't taken any but intend to take some tomorrow and the next day (doing maybe do two days of ompremazole, then one day without it for a while) and see how I go.

So far not bad, but my whole GI tract just feels slightly out of sorts. Windy, the odd pain in all sorts of places.  It hurts to bend over too. 

I haven't had my main meal yet and am rather dreading it - same old chicken casserole!  Yesterday I did have pasta and some bolognese and didn't feel good although no burning pain.  

I continue to lose weight but I'm hoping it is OK as I just can't face the sort of food I normally eat which I have to be truthful contains more fat and sugar than is good for me.

If anyone else is still following this, can you tell me if, when comes off a ppi, one has to eat carefully for a while.  Also,  is it normal to feel slightly uncomfortable for a while after coming off these meds?

Thanks!

 

[Jmg]

40 minutes ago, cristiana said:

Thanks so much, Whitepaw.  I'm very interested to see what you are eating as my diet is becoming rather dull!

I'm just beginning to try tapering the omeprazole as it really disagrees with me and I've been taking it for three weeks so far.  So today I haven't taken any but intend to take some tomorrow and the next day (doing maybe do two days of ompremazole, then one day without it for a while) and see how I go.

So far not bad, but my whole GI tract just feels slightly out of sorts. Windy, the odd pain in all sorts of places.  It hurts to bend over too. 

I haven't had my main meal yet and am rather dreading it - same old chicken casserole!  Yesterday I did have pasta and some bolognese and didn't feel good although no burning pain.  

I continue to lose weight but I'm hoping it is OK as I just can't face the sort of food I normally eat which I have to be truthful contains more fat and sugar than is good for me.

If anyone else is still following this, can you tell me if, when comes off a ppi, one has to eat carefully for a while.  Also,  is it normal to feel slightly uncomfortable for a while after coming off these meds?

Thanks!

 

Sorry you're feeling poorly

Have you seen this page: https://www.peoplespharmacy.com/2015/07/27/getting-off-ppis-can-be-a-challenge/ I think you can get gluten free DGL, maybe worth a try?

[Whitepaw]

Are you substituting something for the PPI?    I'm not sure what meds will mix well with it, but you could ask the pharmacy or Dr. for advice on what might work.   I'm thinking you stopped something that may be helping in some ways, and are now allowing your symptoms to return.   If so, it makes sense to find something else to help with symptom control.  

I don't know what products you have there.   We have Tums (calcium carbonate), Gaviscon (aluminum hydroxide with magnesium carbonate), Pepto and Kaopectate (same product), and Gas-X (simethicone).    I believe all of these can be taken with PPIs, but do check.    I don't know that Pepcid (Famotidine) can be mixed, but you could check that, too.   The Gas X really helps with the bloating and odd pains, as it breaks up the gas.  The Tums seems to help neutralize the acid and upset stomach / stomach pain.  These two are my mainstays.  You may have other products that could be as effective.

Have you tried mixing bone broth with cornstarch or gluten-free flour to make a gravy?  Mix in some ground beef, chicken, or turkey, add some gentle veggies (carrots, or maybe a can of Chinese veggies?), a little bit of gentle spices for taste, and then put over gluten-free pasta or white rice. 

Make a chicken sandwich with gluten-free bread.  

Can you tolerate mayo?   Put a sprinkle of salt, pepper, and lemon juice on salmon, then coat with mayo and microwave.  

Or mix some mayo with chicken or tuna for a chicken salad / tuna salad sandwich;  or eat just a scoop of it.  

If you can tolerate dairy, Schar's newest version of table crackers are like saltines and are tasty.   If no dairy, try their breadsticks.  You could have either with soup or bone broth.   Schar's has enough fat to give you calories to help stave off weight loss, and you can add more by brushing a little butter on the crackers.

You could try other casseroles with tuna or some lean ground hamburger. 

Have you also looked at a possible new food intolerance?   I suffered for a few weeks before I figured out it was dairy for me.   Eliminating dairy wasn't enough.   I had to get rid of anything that might upset my stomach in order to start getting better.  I printed lists of low FODMAP, low acid foods, and low lectin foods, then selected only those foods that were on all 3 lists.   You might consider doing this with food lists that are right for you. 

Hope this might spark some ideas!  

 

[icelandgirl]

Hi Cristiana,

I'm so sorry that you are still not feeling well.  When do you go back to your Dr?

I wish I could help more, but it's so hard to know what was what when I was on the PPI.  I was diagnosed with celiac and h. Pylori on the same day so I was already feeling awful.  Then I was put on 2 antibiotics with the  PPI.  I do remember feeling terribly nauseous, but just assumed it was the antibiotics.  When I started tapering, I still wasn't feeling well.  It really took months before I started to feel decent.  But I assume that it was the celiac.

I really hope you start to see some improvement...((((hugs))))

[cristiana]

Thanks so much, friends!  JMG, I'll try to get hold of that licorice, almost everything I read gives it glowing reviews.  I miss Bertie Bassets licorice (it contains wheat) so it will be nice to have some licorice again. 

Thanks Whitepaw for those ideas, I must admit I'm getting rather fed up with my low fat menu but it seems the best way to keep the pain at bay so it is nice to have something else to cook.  I don't know if I have picked up another intolerance, but you could be onto something there. 

And I know what you mean icelandgirl, we've been through so many tests and treatments it all becomes a blur!  My doctor isn't expecting to see me again unless things aren't better within the month, but I might bring my gastro appointment forward if needs be.

Actually, in the end yesterday didn't go quite as badly as I'd envisaged it would, which makes me think that some of my pain, bloating and nausea are down to the ompremazole - it does warn that can happen on the packet.  When it says 1 in 10 people get these symptoms I always seem to be that 1 in 10!  I don't have any more burning pain or acid reflux (at least yet) but  I'm still losing weight which slightly troubles me.  That said, when I think of how I normally eat I must be down at least 500 calories a day.  JMG will know from another thread that I have a sweet tooth and at the moment the thought of eating a bar of chocolate makes me feel very sick indeed... Oh no - hope that doesn't mean I have developed a chocolate intolerance!

I bought some 10g ompremazole tabs yesterday from Boots, having had nothing yesterday, and I've taken one at breakfast time.  So far so good.  I think I might take these for a few days then taper off.

Thank you so much guys for accompanying me on what would otherwise be a lonely journey.  

[Whitepaw]

Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works.

I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.   

I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress. 

Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal. 

I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean!

Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds. 

 

[Whitepaw]

Just thought of something else.  Have you tried cream of rice cereal?   When I was at my worst, I'd have this a few times a day to settle my stomach. 

[cristiana]

Hi Whitepaw

Your question about what was I eating before I fell ill is a good one.  I had given a party the previous month and there was a lot of cake left over and what is more, it was all gluten free because I had made it!  So I was eating maybe a couple of slices a day...  I was taking soluable aspirin when I shouldn't take it, really.  I was also taking iron supplements.   And adding chilli to a lot of my food - normally not a problem.   And I had a huge amount of stress going on having just completed a project and also having tests on a lump on my tongue. Oh yes - and  I ate some marshmallows which may have contained gluten?  And my son had a stomach virus at the time.

High fat food + aspirin + iron supplements + chilli + stress+ possible glutening + stomach virus?  = gastritis!!

I also ate quite a lot of walnuts the days before it got really bad so maybe they didn't help. I need to be much more careful - it has taught me a lesson. I'm particularly cross with myself about the aspirin and also not checking the marshmallow ingredients as I am usually so careful.

I know exactly what you mean about dreading the next meal - last night I had chicken and potato again but added a tiny bit of bolognese and I actually enjoyed the meal, which I think meant it sat easier in my stomach.  

I think that there is a psychological element to acute gastritis, too.  I think if one is stressed it can hang around a lot longer.  I have read a few posts from people who found after trying to do all the right things to get better it was going onto medication to help with stress that actually helped them get better in the end.  I can see that - because if I could hear the children fighting, or had a stressful conversation with someone, I could actually feel my stomach react.

Anyway - thank you for your help, I am so grateful.

And great idea about the food diary.  Perhaps, also, worth making a note about stress factors on a particular day, and what meds one was on.  I think ompremazole was a great way to stop the gnawing pain for me but since I have lowered the dose I have to say that a lot of the bloating and feeling of nausea has gone.

I think if I ever get gastritis again I'll stick myself on a gastritis diet first, just for a few days.   If that doesn't help I'll probably check with my doctor but take ompremazole for maybe two to three weeks til the gnawing stops, then taper down.  I hope it won't happen again though!  There is no doubt about it, it is a drug to be taken with caution, but I have to say I have heard some success stories too of people who took it short term and were helped tremendously.  I think tapering off it is probably a good idea, though, because I do have a friend who I think is suffering from rebound at the moment by coming off an inhibitor cold turkey.

[Karaaa]

On 7/8/2017 at 10:59 AM, cristiana said:

Hello experts!

I wondered if anyone has had recourse to use slippery elm for either gastritis or glutening.  I am not sure which I have but the pain is just below my sternum, a sort of burning gnawing pain that started a week ago and has waxed and waned to some degree depending on the food I have consumed (spicy/fatty food/dairy being the worst).  I was supposed to be seeing my gastroenterologist and was going to mention it to him but the appointment was wrong (hospital mistake).  If it doesn't improve in the next few days I'll have to see my GP.  

The sensation is pretty familiar - I felt like this before my diagnosis and going gluten free and have had similar episodes since (mostly due to imbibing NSAIDs and Iron - which I am afraid to say I took just before the attack) but this is probably the worst the pain has been since adopting the gluten free diet.  So my two questions are: 

a) has anyone found slippery elm useful for gastritis or glutening (I would take otc opremazole but last time I did I had terrible diarrhea).

and b ) can anyone tell if there is any easy way of discerning the difference between gastritis (which I think affects the stomach, doesn't it?) and glutening.

(I ask this as it could also just be glutening, too, thinking back on some possible cc over the last few weeks)

Thanks!

 

Hi Christiana!

In my experience, when I'm glutened I have a very distinct pain in the lower right quadrant of my abdomen, not so much my sternal area. Your intestines sit a bit lower than that and that's where the damage really happens so I can't imagine it being gluten. 

Slippery elm has helped me greatly for both. If you have licorice or marshmallow root on hand its great for masking the taste. I just mix about a teaspoon in my hot tea. I've tried it with apple juice but was not a big fan. 

Also found that sleeping on my left side helps when I have a stomach ache or indigestion. I read up on Ayurveda and sleeping on the left side helps improve lymphatic flow and digestion. 

Hope it helps! I probably sound like I'm all over the place but I've really been up to try anything to relieve symptoms :/ 

[Whitepaw]

Hi Cristiana,

How are you doing now?

[cristiana]

On 8/10/2017 at 1:45 AM, Whitepaw said:

Hi Cristiana,

How are you doing now?

Hello Whitepaw

It's so sweet of you to ask - thank you.

I have been away on a childrens' church camp and I have to say, been eating lots of gluten-free stodge from packets and very few health foods - but despite that all seems to be well.  I weaned myself off the ompremazole having gone down to 10mg, taking it alternate days, then once every two days, then once every three days, and now I am on a fifth day stretch without having taken it and apart from mild discomfort, feel much better.  The heartburn has gone, and the gnawing pain has gone. 

That said, my whole digestive tract does feel slightly 'off' since this journey began at the beginning of July.  I'm not entirely sure why. I don't know whether to blame the medication or a slightly altered diet but I feel kind of bloated all over, with random albeit mild pain under my left rib, down my lower left side, and occasionally to the right.  I am still suffering with loose bm's which I think is partly stress (some stuff is going on that is a bit stressful at the moment).  I think I need to eat some pro-biotics and get back onto the health food diet again.

I found the whole things stressful and lost about five pounds but yesterday had some HA with something else and spent much of the time on the loo (sorry tmi) so I suspect I've lost even more.  

I am very grateful that the gnawing pain has gone though - and your tips, and the tips that others have sent me, are all part of the cure - thank you!

[cristiana]

On 7/16/2017 at 0:17 PM, Jmg said:

I was at my local pharmacy a month or so ago and chatting to the pharmacist. She said she was doing 35-40 omneprazole prescriptions per day - this in a tiny pharmacy serving quite a small area. 

I think there's an epidemic of prescribing this drug here in the UK at present. The worrying aspect is that a lot of people who go in it for that 4-6 week period don't come off it again afterwards. I'm not sure if this is due to poor follow up from the GP's or just a lazy/pragmatic decision by the NHS to manage the various symptoms rather than tackling sources. Either way, like GFinDC above I'm worried there's a price to be paid further down the line. I feel a similar way about the overprescribing of SSRI anti depressants also.

Anyway, I don't want to worry you 5 days in Cristiana! Ignore my ramblings. I hope they clear things up, but don't stay on them for longer unless you absolutely have to!

Hi Jmg - and anyone who is familiary with ranitidine (Zantac)

Firstly, Jmg, I hope you don't mind my quoting your old post from last month to get your attention, but I wanted to speak to a fellow Brit as I'd value some advice from someone who knows how the NHS works. (I love the NHS by the way, not having a go at it, but unlike the States we often have to wait a long time to get to see the person we really need to see don't we?  I have to admit to envying the people who say I've had an endoscopy, colonosocpy, full blood work, scan etc, in what appears to be a short period of time!)

Anyway, getting back to the subject, I thought I had recovered from this 'gastritis' or GERD business, if that is indeed what it is.  I had successfully weaned myself off omeprazole and found that I was only getting a bit of burning back about 4 to 5 days after last taking a dose - nothing terrible - and that was when I went back to my old fatty diet (not good, I realise!) 

I was meant to be seeing my consultant on my bi-annual check up but saw another, who was lovely, but asked how my gluten free diet was going (good), and if I drank (no) and concluded my symptoms were probably gastritis and stuck me on 300 mg of ranitidine (instead of omeprazole) for two months.  No mention of a precautionary scope.  My full blood count, liver function tests, iron and B12 are all good at the moment which is the only thing that is giving me hope that it is isn't something really much more serious going on.

My symptoms of bloating and feeling nauseous seem to be worsening again since starting the ranitidine but I'm not sure if it is because that is  how one reacts when one starts taking a new drug - it appears that it can affect people in this way.  So far I have taken it for 48 hours.  I can't see my usual consultant now til February, so will probably have to go private to see him when he is back from his hols mid-September.

I'm feeling really sick around the middle of the day but oddly seem a lot better around bedtime.  

I feel so frustrated because I can't seem to budge this illness.

Any tips on what you would do in my situation given the limitations of the NHS, or from anyone who has had a bad time with Zantac, I'd be really grateful to hear.

[Jmg]

1 hour ago, cristiana said:

irstly, Jmg, I hope you don't mind my quoting your old post from last month to get your attention,

Course not!  Although I'm naturally devastated that you weren't quoting me to marvel at the inebriating effects of the exuberance of my verbosity 

 

1 hour ago, cristiana said:

Any tips on what you would do in my situation given the limitations of the NHS

I spoke to a family member who is a pharmacist, she says nausea and bloating aren't the main side effects but they can occur. She would suggest you give it 7-10 days as there's often an adjustment period to starting on a new medication and side effects often disappear soon after they appear. If you're still in discomfort in 7-10 days however you would need to follow up via your GP. 

I would simply add the timeless advice of Douglas Adams:

Not easy in our land at the moment

 

[cristiana]

1 hour ago, Jmg said:

I spoke to a family member who is a pharmacist, she says nausea and bloating aren't the main side effects but they can occur. She would suggest you give it 7-10 days as there's often an adjustment period to starting on a new medication and side effects often disappear soon after they appear. If you're still in discomfort in 7-10 days however you would need to follow up via your GP. 

I would simply add the timeless advice of Douglas Adams:

 

Not easy in our land at the moment

 

Thanks so much Jmg!  That's really helpful!  Especially for speaking to a member of your family who is a pharmacist, that is going the extra mile.  Many thanks to them, too.  

I have to say I have a GP in my family but I try very hard not to ask him questions as he'd have to retire from general practice in order to keep up!  Thankfully for him he is out of the country at the moment!

Her advice is great - that will tie in nicely with a trip that I have to make.  I will get back in eleven days so things will either get worse whilst I'm away or better. Who knows, maybe they will improve...   

I had a very interesting conversation with a friend of mine, a fellow sufferer of several months, finally diagnosed by scope, who has finally come of Lanzaprazole after a disastrous few months trying Omeprazole, Renitidine, you name it.  Her GP said that it is often a question of trying several medications, taking up to 3-4 months, and only then sending someone off for an endoscopy. So the fact that I haven't been offered one yet sounds like standard procedure.  It is unsettling for the hypochondriac that I have become but that's just the way things appear to be round here.

As you say, Don't Panic! Don't Panic!  (Looks like Jonsey has a touch of the gastrics in this one!)

[Whitepaw]

Hi Cristiana,

I was interested in your post.  I, too, have been better, then worse, only to repeat the cycle again.  I had been posting in the Corn thread, and it seems the author of that thread (Ssdave?) is having the same problem.  I received many helpful replies in that thread, which I followed up on, but ultimately, none worked out, and i am back to square one again. 

I did see a new GP and he first had me on Pepcid for 2 weeks (2x daily), and then on to Prilosec. Initially it helped me, but I am in the 3rd week and may as well toss it out the window as it seems to be doing nothing.

I tried to get in to see my GI, but there is a 3 week wait, so I don't go until next week.   Meanwhile, here's what I've been doing ... 

I made a list of the foods that I seem to be tolerating, and that is all I'm eating ... sort of.   When I do this for 4 days, I really do get better, and then I decide to try just a bit of this or that.   From what I've read, elimination diets like this have to be done for 30 days.   My list is so short that I don't see how I can do it.  After 4 days of tuna the sight of it made me want to never eat again, and I start to stray ... and then I get sick again.   

The nurse at the GI office suggested I try Beano (enzyme) with everything I eat.   Tried that one evening, and woke up with horrible heartburn at 2:30.  Could have been this or something else, not sure, but I was afraid to try it again. 

So I don't know what's in store for me now.  I, too, go through thinking it's just GERD and then wondering if it's my gall bladder or if something more is going on.

I downloaded Gluten Dude's e-book, and he speaks of having a bout of this for 6 months after a dietary indiscretion.   I'm thinking that I may be suffering now from mistakes I made because I didn't have the proper info at diagnosis 4 years ago.  For example, from what I've read in a few places, it appears that Celiacs shouldn't be pushing their GI systems, like with overeating, eating too much of one thing, and having too many potentially irritating foods.   I sort of figured that as long as I didn't have gluten, I was good to go.  Apparently not the case....

 

 

[C-rats]

I was also diagnosed with GERD and extreme gastritis when my doc found celiac. As my doc said, everything was inflamed. I was prescribed Prilosec and it was really hard to take at first. The side effects were very uncomfortable. Every time I called the doc to talk about side effects, I was told to keep taking it. Eventually, it was fine. I take it every morning and I definitely feel better. It took more than two weeks to get used to it, and I even took it every other day for a week at the start.

The reason my doctor pushed it is because he said it is the best drug for extreme inflammation.

Good luck!

 

[Whitepaw]

What sort of side effects did you have?  I feel like I still have acid every morning, upset stomach,  bloating,  burping, and poor tolerance to most food.

[cristiana]

9 hours ago, Whitepaw said:

Hi Cristiana,

I was interested in your post.  I, too, have been better, then worse, only to repeat the cycle again.  I had been posting in the Corn thread, and it seems the author of that thread (Ssdave?) is having the same problem.  I received many helpful replies in that thread, which I followed up on, but ultimately, none worked out, and i am back to square one again. 

I did see a new GP and he first had me on Pepcid for 2 weeks (2x daily), and then on to Prilosec. Initially it helped me, but I am in the 3rd week and may as well toss it out the window as it seems to be doing nothing.

I tried to get in to see my GI, but there is a 3 week wait, so I don't go until next week.   Meanwhile, here's what I've been doing ... 

I made a list of the foods that I seem to be tolerating, and that is all I'm eating ... sort of.   When I do this for 4 days, I really do get better, and then I decide to try just a bit of this or that.   From what I've read, elimination diets like this have to be done for 30 days.   My list is so short that I don't see how I can do it.  After 4 days of tuna the sight of it made me want to never eat again, and I start to stray ... and then I get sick again.   

The nurse at the GI office suggested I try Beano (enzyme) with everything I eat.   Tried that one evening, and woke up with horrible heartburn at 2:30.  Could have been this or something else, not sure, but I was afraid to try it again. 

So I don't know what's in store for me now.  I, too, go through thinking it's just GERD and then wondering if it's my gall bladder or if something more is going on.

I downloaded Gluten Dude's e-book, and he speaks of having a bout of this for 6 months after a dietary indiscretion.   I'm thinking that I may be suffering now from mistakes I made because I didn't have the proper info at diagnosis 4 years ago.  For example, from what I've read in a few places, it appears that Celiacs shouldn't be pushing their GI systems, like with overeating, eating too much of one thing, and having too many potentially irritating foods.   I sort of figured that as long as I didn't have gluten, I was good to go.  Apparently not the case....

 

 

Hello Whitepaw - and commiserations.  

That is so interesting about Gluten Dude, I've read a lot of stuff on his website when I'm going through bad stuff and have always been encouraged.  That thing about a dietary indiscretion rings true to me.  My perfect storm involved aspirin, iron pills, stress, a possible glutening and a stomach virus - but before that I'd been eating cake for England.  It was gluten free, but I'd baked several cakes for a party and there was a lot left, and so I ate slices several times a day for a few days.  I could kick myself.

I glean some comfort from the fact that this sort of thing is all to common in this modern age.  I had had no idea how many people around me have trodden a similar path.  Some people take pills that they never come off; others are fortunate enough to have taken the tablets and recover and never look back, and others try to use alternative old fashioned remedies with some success.  I did hear of one old guy who took slippery elm all his life and made it to 99!

Another thing that is odd is some people I've been speaking to suffered from it and then it suddenly went - almost without explanation.  I do wonder if in these cases if stress (and its removal) had something to do with this.  

What I am finding so exhausting is trying to figure out all of this for myself.  I'm also scared as yet another pound has dropped off in the last few days.  Normally I'd be thrilled I'd lost six pounds, but I'm finding it kind of scary.  Because my pain is  sometimes in my upper left side, beneath my left ribs, I fear it is my pancreas, and yet I read gastritis sufferers get this sort of sensation.  

I know six pounds is nothing in six weeks - considering, like you, you I'm not eating normally.  I now have a fear of eating in case it sets something  off again.  I hear you about Tuna!  

My friend that I mentioned yesterday told me that she is sure that the medication was making her feel off - so perhaps you and I have been contending with that too.

I can't recall - what tests have you had so far to confirm your diagnosis?  Did you have a scope?  I'd dearly like a scope but I don't think they will give me one til at least another couple of months....

 

 

[cristiana]

9 hours ago, C-rats said:

I was also diagnosed with GERD and extreme gastritis when my doc found celiac. As my doc said, everything was inflamed. I was prescribed Prilosec and it was really hard to take at first. The side effects were very uncomfortable. Every time I called the doc to talk about side effects, I was told to keep taking it. Eventually, it was fine. I take it every morning and I definitely feel better. It took more than two weeks to get used to it, and I even took it every other day for a week at the start.

The reason my doctor pushed it is because he said it is the best drug for extreme inflammation.

Good luck!

 

C-rats - thank you.  Did you pursue Prilosec for many weeks before things settled?  I felt slightly off when I was taking Omeprazole but I was only on the full dose for three weeks, then started to taper it.  Perhaps I should have tried it for longer?

[cristiana]

9 hours ago, Whitepaw said:

What sort of side effects did you have?  I feel like I still have acid every morning, upset stomach,  bloating,  burping, and poor tolerance to most food.

Hi Whitepaw

I think maybe you are asking C-rats this question but in case you meant me too, I get acid at random times of the day - but usually towards the end; diarrhea with the Omeprazole (prisolec); constipation with RAnitidine; burping when I drink hot drinks (for some reason it brings it up!) and a feeling of bloating under my left rib - but this symptom waxes and wanes.

Exercise is one thing that really helps - not sure why.  But I can't walk 24 hours a day!

[Whitepaw]

35 minutes ago, cristiana said:

Hello Whitepaw - and commiserations.  

....

What I am finding so exhausting is trying to figure out all of this for myself.  I'm also scared as yet another pound has dropped off in the last few days.  Normally I'd be thrilled I'd lost six pounds, but I'm finding it kind of scary.  Because my pain is  sometimes in my upper left side, beneath my left ribs, I fear it is my pancreas, and yet I read gastritis sufferers get this sort of sensation.  

I know six pounds is nothing in six weeks - considering, like you, you I'm not eating normally.  I now have a fear of eating in case it sets something  off again.  I hear you about Tuna!  

My friend that I mentioned yesterday told me that she is sure that the medication was making her feel off - so perhaps you and I have been contending with that too.

I can't recall - what tests have you had so far to confirm your diagnosis?  Did you have a scope?  I'd dearly like a scope but I don't think they will give me one til at least another couple of months....

 

 

I had the usual blood tests at my GI in early May.  I saw him 2 days after this started, but didn't realize anything was actually going on.  I was bloated, but passed it off as side effects of my sinus meds.  In reality, it was new dairy intolerance.   I'd had a cup of milk before I left for the appointment.   My only scope was 4 years ago at diagnosis.   Although it would be good to see what's going on now, I am so afraid of being knocked out that I hope I don't need one.

When we were posting before, I hadn't really lost any weight ... maybe a pound or two.    Last week, when I called for a GI appt., the nurse told me to start a food diary.  That opened my eyes quickly.  I could see right away that a bite of this and that throughout the day, and trying new things to see if I could tolerate them wasn't a very scientific approach to figuring out what was causing my symptoms. That's when I made a list of what I seem to tolerate best most of the time, and then things that I often can tolerate, and then another that I can sometimes tolerate.   I have tried to stick to that first list, the best tolerated, which is why I'm mostly eating tuna, well cooked soft smashed up veggies, rice, and a little soy milk.  I can swap out the tuna for fish, plain chopped chicken, ground turkey, or ground beef.    You can see why it gets old fast!   I find that limiting to smashed up / ground foods makes it easier to digest.  I even bought a few containers of baby food to have on the go. 

At any rate, this limited diet, eating small amounts throughout the day, and my 40 min. brisk walk every evening, has resulted in losing about 3# per week.  Not an issue right now, as I had added weight after my initial healing, and it makes sense that I'd be losing with more exercise and less intake. 

I am wondering if the medicine is making me feel off.   I seem to still have acid when I wake up;  I'm ok until I move, like roll over or get up and move around.  I do have acid throughout the day, sometimes after eating, and I often burp after eating (less with the most restrictive foods).  I've also been having strange dreams.   At first it was food dreams, but this morning it was odd things, like being in Alice in Wonderland. I need to look up the list of possible side effects.

I tried coconut water with pineapple juice (purchased in a can) yesterday and thought it was fine, so I bought more.  I'd read it has tannin and that can be healing and help with acid reflux (no studies, just reports from users). Tried 1/4 cup of the plain version (no pineapple) yesterday evening and it set off a lot of bloating and burping.

And yes, from your other post, exercise does seem to help.  That 40 min. walk is great.   I do walk a lot during the day, but not in the way of an actual walk that does more. 

 

[Whitepaw]

54 minutes ago, cristiana said:

What I am finding so exhausting is trying to figure out all of this for myself.  I'm also scared as yet another pound has dropped off in the last few days.  Normally I'd be thrilled I'd lost six pounds, but I'm finding it kind of scary.  Because my pain is  sometimes in my upper left side, beneath my left ribs, I fear it is my pancreas, and yet I read gastritis sufferers get this sort of sensation.  

 

 

I understand this.   I also find it exhausting.   The docs don't seem to realize how debilitating this is, and how lost we are.  I guess it's a small problem in the grander scope of things they deal with daily.   i am comforted to know that there are others out there with similar problems.  And I know what you mean about thinking it might be this or that.   Without any diagnosis or direction, it's hard to not keep looking on your own.