Living with LPR (or not so Silent Reflux)

Digestive health
81

Hi Tom,

Thank you so much for taking the time to reply, I really appreciate it.

You must have had a lot of self-control to manage on the strict acid free diet for those 2 years, but I’m glad you have been able to re-introduce some of the foods you like, that must seem like such a treat now! I don’t know how you managed to refrain yourself at family functions, eating out, etc. - must have been hard but you did it!

I finally managed to speak with an ENT consultant yesterday after leaving a message a few weeks back, and expressed my concern that nothing seems to have changed over the last two weeks. I was prescribed Omeprazole once daily - I took the first one this morning - and also advised to take Gaviscon after each meal, then to report back after about 2 months. I’m careful to keep a more detailed food journal now too. She did say however, that improvements will take longer than two weeks to come about, so to be patient!

I am eating mainly vegetables and fruit (nothing citrus), some chicken for the protein, nothing spicy or tomato based such as bolognese or pizza. It’s hard when the kids get takeaway pizza whilst I munch on my sad little jacket potato! I also drink almond milk rather then semi-skimmed.

I can still feel the acid just sitting there at the back of my throat causing the sore throat, and that worries me, together with the constant swallowing, burping, nasal drip and ear pain, but I’m hoping the longer I follow this bland diet, together with the meds, the better I’ll feel. Like you, I don’t want to be taking the Omeprazole for too long a period, but will see how it goes - of course, I understand that each person is different.

I just have a couple more questions:
Did/do you take any gut friendly bacteria (eg 3 billion/10 billion) tablets or probiotics such as yoghurts to help ease your symptoms/improve your gut health? My tummy feels bloated and gassy, I don’t know if you had that.
How about multi-vitamins or any other supplements?
Have you been able to find any alternatives to margarine/butter/cheese (fatty products) as toast/bread is so dry otherwise! Can’t seem to find any fat-free alternatives! I don’t know about jam as that’s very sugary.
Did you have any more endoscopies after the LPR was diagnosed, if so did they show up the improvements that you feel?

I don’t use FB much either but will have a look at LPR sites. I would never have considered this, so thanks for the suggestion.

Thank you also for giving me this opportunity to ask questions, it really helps and it’s so encouraging that you feel you are 95% ok now. I am so happy for you as it seems your hard work and persistence is finally paying off - 3 years is a long time but you are managing it, and managing it well - well done Tom! You’ve given me hope that there is light at the end of this long tunnel.

Take care and God Bless.

Sherrie

82

Sorry Tom, a follow on from my post just now - I forgot to ask - I remember you said early on that you purchased an acid diet book - I think the Acid Watcher Diet or something similar. I read that it’s targeted more towards the American market and there are several ingredients that you cannot purchase here in the UK. Did you find that? If so, did you just follow the recipes without whatever you could not obtain? I have not got any recipe books yet but am considering it as what I am having is very simple/basic, pretty much straight out of the fridge.

Many thanks.

Take care and God Bless.

Sherrie

83

My apologies Tom, a couple of further questions I just thought of - for the two years that you were strictly following the low acid diet (and maybe even now), did you eat little but often, as is advised? If so, every 2/3 hours would you say? Would you have snacks in-between meals to ensure you had something in your tummy to prevent acid build-up?

I’m finding this particularly difficult to do as usually go about 4 hours between meals. May have to set my watch on a timer to alert me so I don’t go so long between meals, perhaps have snacks in-between.

Were there any signs for you that it was time to eat again, e.g. burping due to acid coming back up to the throat? Or sounds coming from tummy due to hunger or acid build-up?

Sorry about all these questions, it really helps to be able to talk to you about this.

Thank you!

Take care and God Bless.

Sherrie

84

i have a similar experience and have LPR for over 6 years with nothing really helping. definitely found pantaprozole to be not helping at all, often when I take it it just makes me belch a lot. i elevate my head with a wedge and pillow but that isnt apparently helping either.
The gastroenterologist I had was in my estimation very unmotivated, telling me in the follow up that something seems to be prying my LES. A good doc would do a workup to why a person has LPR
But this is Canada.

im totally frustrated, I lost 35 lbs and changed my diet but it still haunts me and I have a sore throat especially on the left side as you stated, curiously.
Drug companies work on masking symptoms but never the root causes.

D

85

First time here and thanks tcb9 above for posting her experience with LPR/Silent Reflex. As an intro, I’ve had breathing issues for about 4 years and have seen many, many doctors. At first , it was thought that I had asthma so I started alergy shots. Then it was a nodule on my lungs so I had a biopsy followed by a collapsed lung. Then, Vocal Chord Dysfunction. Then, GERD. And, throughout this time, I had many, many tests to rule out this and rule out that.

The current dx is GERD but I have no gastrointestinal symptoms. A month ago I was put on metronidazole. I was perplexed because I have no digestive symptoms. I probably take 2-3 Tums, at most, a year! The only symptom I have is breathing difficulty when leaning over, like to tie my shoes, or when starting a physical activity but in about 10 minutes, my breathing returns to normal. And…, I feel like I need to clear my throat frequently.

Four weeks ago, I started omeprazole. I noticed I was having many leg cramps which I didn’t pick up as a possible side effect. Last week I had a horrific cramping in both legs (first time ever) in the early morning. I got out of bed, my legs flew outward and I now have a compressed T12 and have stopped the this med. I haven’t been diagnosed with or treated for a magnesium deficiency but stopping this med and 4 days of eating bananas, I’m fine now. The current medical recommendation is to drink lots of alkaline water a day.

Okay, so this is a lot of information and from what I’m understanding this is a not uncommon experience! I’m still learning…

I don’t like my ENT doctor so am looking for a gastro doctor at this time. I noticed there’s lots of books so plan to visit my library to look through the books they have. I saw the Acid Watchers book and will likely order it.

All suggestions welcome!

86

Just breathing and throat clearing.

87

I cant tell you how relieved I am to have read your post
You feel you’re on your own with this condition.
I am on waiting list for a respiratory appointment.
I have now been on ppis for over six months.
Just being able to give it a name has lessoned my concern
Although I need to loose weight I’m extremely fit for my age , but I can barley run up the stairs without getting out of breath and then the cough starts.
I’m going to start changing my life style today.
I don’t drink alcohol ( but was told to cut down on my drinking) I gave smoking up 30 years ago (I’m 61)
I had an ulcer in the past so I’ve put it down to that.
Now I realised I’m speaking to you when it should be my doctor , but we both know self diagnoses is now the norm, you have given me more positive answers in the time I took to read your post than I’ve had in over four years from my doctor
I live in hope now

88

Hi Sherrie
Apologies for the delay in answering your questions. I honestly tried every probiotic and supplement you could think of. I was so desperate for an improvement I would have done anything. Did they work? I’m not convinced. Cutting out acidic food and being really strict with the diet, in my opinion, is what gave my throat the chance to heal. I did lose quite a bit of weight during the first 6 months. I have put some of it back on again as I’ve reintroduced some food.

Regarding the alternative foods I did try soya butter but didn’t like it therefore gave up on it. I was actually ok with cheese. The one food that seemed to trigger a reaction was tomatoes. A few months ago after eating tomatoes again on a regular basis I had a bit of a relapse. I stopped with the tomatoes and all was good.

You are correct about the US v the UK in terms of the recipes however I found that most of the time I could get pretty close so wasn’t a particularly big deal. Definitely worth getting a couple of recipe books. The bigger challenge for me was eating out with friends but more so colleagues at work. Often when attending events etc for work I would need to plan ahead and take my own food.

I did try to eat smaller but more frequent meals but tried to refrain from eating beyond 7pm.

It’s now July 2022 and it must be almost 4 years since my post. I do feel as though I’ve come a long way and have seen huge improvements. I still don’t eat very spicy food, tabasco sauce etc but I can have a beer or a gin and tonic and I seem ok. For the most part I’m living a normal life. Clearly everyone is different and as such we are all impacted differently. Some people suffer more seriously than others and perhaps I have been one of the ‘lucky’ ones.

I appreciate it’s easy for me to say this but do try and stay positive

keep the faith

Tom

89

Hi, it looks like it’s been 4 years since you wrote this blog. Are you still suffering with LPR? I am really thinking that we need an advocacy group to help us since the gastro and otarylaryngology communities are really clueless on how to treat this illness.

90

Tom, I just started having occasional voice issues in Nov - Dec 2022. Have only lately deduced that I probably have LPR. Similar to your experience I have the occasional pain on the left side of my throat (below Adam’s apple) when talking. I have seen an ENT who says my throat looks okay (“no lumps, bumps”, etc. - his words). I have only this week started trying to eat low acid. I am encouraged by your posts regarding your progress. I feel that my symptoms are very similar to yours.

Praying I get some relief soon and I hope you stay well.

Rob

91

How are you doing now man? So what you eat if you are very low in carb, sugar, and grains. I eat grains basically every day is that bad for LPR? I don’t have problems with it.

I have LPR I think for more than year and I found out in October last year that I actually 100% have it and I take it seriously first I took famotidine 20 mg liquid at night for one month and stopped and I am currently taking only pantoprazole sodium 40 mg on the mooring. Note also I am currently following a strict diet since October last year. The main thing that this LPR causing is Dysphasia, discomort over the stomach, always wanting to clear the throat, crazy weight loss, and shortness of breath.

92

i was diagnosed by ENT consultant in December 2022 after suffering for many months and having a botched endoscopy which left me with haematoma in throat anpd on anti depressants! Previously had a colonoscopy which confirmed diverticulotis not diverticulitis. Eventually in Dec I got the up nose and back of throat camera.
consultant handed me a leaflet and told me to get Gaviscon Advance take 4 times and day and Lansoprazole twice a day reducing after 2 months. No other advice. I’m off antidepressant but do get down. I’ve modified diet and cut my alcohol right back. I find some days worse than others. Is the feeling that back of throat feels swollen sometimes normal? I do find I have to clear throat too.

93

i did send a message are you still posting?

94

Hi ive just recently been diagnosed was given a lealet and told Gaviscon 4 times a day and Lansoprazole 15mg twice a day. no info on diet. just found this support group so intend to start eating differently

95

i was diagnosed with LPR in December apart from Gaviscon Advance and 15mg Lansoprazole twice a day and a leaflet that was it.
it seems to be getting worse rather than better.
is it OK to drink decaffeinated tea?

96

ive posted a couple of things but it doesnt seem to come up when i log in can anyone help please?

97

are you still reading/posting on this forum.
ive purchased a book called the Ultimate LPR cookbook.
the Web is so confusing says no tomatoes, then another cook well, then another says you can have beans on toast, beans being in tomato sauce! my consultant was pretty hopeless put camera down then shovedtwo leaflets in my hand saying I’d got laryngopharyngeal reflux and sent me on my way with instructions to take Gaviscon Advance 4 times a day and Lansoprazole 15mg twice a day for two months then reduce.the Lansoprazole is now starting to give me stomach ache which is why I had yo give up Omeprazole. to say I’m confused and anxious is an understatement!

98

Hi. Thanks for sharing your detailed account of what does sound like LPR . I have been experiencing very similar for a year, since recovering from a chest infection. GP has prescribed Lansoprazol 30mg which hasnt really helped. I notice more throat congestion in a morning which is a yellow colour. I worried this meant an infection but gp didnt seem to think so. I wonder if any others also experience yellow/green mucus? Thanks for reading

99

So can I ask tcb9 have you stopped taking the PPIs ? Have your symptoms improved?
I ask as yours started out similar to mine.
Thanks

100

My worst symptom is a burning tongue, which comes and goes - worse as the day progresses. Right now, the worst part for me is the depressing realization that this will make it very hard to have quality of life. For instance, what do I do at social events when everyone else is eating? Stare at them? Bring a protein drink? This is all new to me, and I’m so so sad.