Reflux related cough anyone?

[Posterboy]

Cristina and NNowak,

Don't be afraid to take  you a good enzymic B-complex...B-Vitamins work synergistically together...I promised the moderators....I won't wear people with too many links...you can search through my profile..here are three links that can help you...low stomach acid is being mistaken for high stomach acid and overgrowth of bad bacteria can cause an ulcer etc...see the HHMI research....my best advise...is step down off the PPIs by going low carb not just gluten free....carbs ferment and never mix carbs and fats in the same meal...with your left side sleeping things should get better in a few months...don't go cold turkey off the PPIs after a month to 6 weeks on the B-complex...your PPI's will stop working (as well) that is a sign to step down by a 1/4 to a 1/3 in dose...until the B-complex takes over and heals (best twice a day or with meals) the linning of your stomach.....evidenced by a strong and regular burping action....even to water after a few months...

 https://academic.oup.com/jn/article/143/12/1966/4614831

https://www.tandfonline.com/doi/abs/10.1080/01635589009514098

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

Again I hope this is helpful but it is not medical advise....but it helped me.

Posterboy,

[Posterboy]

NNowak,

As long as you have had these problems you might want to consider non-GI causes...

I meant to include this link...

 https://www.mdedge.com/ccjm/article/105417/gastroenterology/not-all-abdominal-pain-gastrointestinal

Again I hope this is helpful.

Posterboy,

[NNowak]

Thanks Posterboy!!  I weaned off PPIs after the discovery of deficiencies in August 2019. I give myself injections of B12, which raised all my other Bs. It also has helped with stomach pain and the stool issues. Funny, the GIs state they have never heard of that, despite many research articles stating just that. Bs are soooooo essential!!  
 

My functional medicine doctor suggested I get tested for SIBO due to the decades of stool issues. My previous GI wouldn’t test. I expect the FM doc will when I see her for follow up. Not sure what my new GI will do. My issues seem to be chronic systematic inflammation (high ferritin, high thyroid hormone, GI inflammation) so possibly steroids while my GI tract heals. Other ideas?
 

Keep supplying the research links, please!!  The more we know, the healthier we are. Thank you!!

[NNowak]

17 minutes ago, Posterboy said:

NNowak,

As long as you have had these problems you might want to consider non-GI causes...

I meant to include this link...

https://www.mdedge.com/ccjm/article/105417/gastroenterology/not-all-abdominal-pain-gastrointestinal

Again I hope this is helpful.

Posterboy,

Interesting!!  The GI jumped to gallbladder issues........my medical history clearly shows my gallbladder was removed 2 months before my Celiac diagnosis. Should have been a red flag they didn’t refer to my medical history, or their own notes. 
 

I’m fortunate because my FM doc has also treated me for my vertebrae and rib fractures the past 3 years. She’s an anesthesiologist with a fellowship in pain management - at her “real job.”  She’s maintained that my lack of healing was from an autoimmune flare for the past 3 years. My PT insisted I go back to my internist for additional autoimmune testing. It’s been a journey and I’ve made quite a few docs really uncomfortable with my pursuit of an answer. My pancreatic enzymes are high and I have granulomatous changes in my liver to match my elevated ferritin. My celiac sister has chronic pancreatitis and hemochromatosis. Western medicine is just not equipped for autoimmune diseases. I’ll get there!!

 

Thank you!!

[cristiana]

Just by way of conclusion, folks, tests revealed nothing (endoscopy, chest X-ray) so it has been concluded I have silent reflux.  Very relieved, but also surprised at how much trouble it has caused!  I have actually met someone recently who has been coughing up blood, had all the tests, and she too has had a diagnosis of silent reflux!

I've found that a wedge pillow helps; going to bed 3-4 hours after my last meal and also using Gaviscon, after a meal but also before bedtime.  My consultant said that because Gaviscon has helped me that's a really good indication that the problem is silent reflux, as it is creating a sort of barrier which stops the worst of the reflux from happening. 

I've come off the Nexium with very little trouble.  Occasionally I still find my throat feels irritated and my lungs feel a bit irritated too, but a blue inhaler helps.  I think all this time I've had a throat infection that comes and goes and it just made things feel so much worse.

I do hope that you all find answers too.  Thank you so much for your support.

[cyclinglady]

5 hours ago, cristiana said:

Just by way of conclusion, folks, tests revealed nothing (endoscopy, chest X-ray) so it has been concluded I have silent reflux.  Very relieved, but also surprised at how much trouble it has caused!  I have actually met someone recently who has been coughing up blood, had all the tests, and she too has had a diagnosis of silent reflux!

I've found that a wedge pillow helps; going to bed 3-4 hours after my last meal and also using Gaviscon, after a meal but also before bedtime.  My consultant said that because Gaviscon has helped me that's a really good indication that the problem is silent reflux, as it is creating a sort of barrier which stops the worst of the reflux from happening. 

I've come off the Nexium with very little trouble.  Occasionally I still find my throat feels irritated and my lungs feel a bit irritated too, but a blue inhaler helps.  I think all this time I've had a throat infection that comes and goes and it just made things feel so much worse.

I do hope that you all find answers too.  Thank you so much for your support.

Glad you know where you stand!  

[Posterboy]

On 2/6/2020 at 5:17 PM, cristiana said:

I've come off the Nexium with very little trouble.  Occasionally I still find my throat feels irritated and my lungs feel a bit irritated too, but a blue inhaler helps.  I think all this time I've had a throat infection that comes and goes and it just made things feel so much worse.

cristiana,

Here is an old thread that might help you about EOE that used to be called esopaghitis  or (inflamed esophagus) and/or silent reflux.

and this nice article about why many people do not get better on PPIs. It was 5+ years ago and PPIs are seemingly as popular as ever.

https://www.foxnews.com/health/gerd-or-nerd-new-type-of-heartburn-doesnt-respond-to-drugs

I hope this is helpful but it is not medical advice.

Posterboy,

[cristiana]

Hi Posterboy

Thanks so much for posting these helpful links. I do think that PPIs dished out at a drop of a hat here in the UK, but it's important to find out if they are really needed.

There have been a few instances when I've been given a PPI prescription.  Once I was prescribed omeprazole when I had very sore, burning stomach pain but it turns out it was undiagnosed coeliac disease causing the pain.  Interestingly, the PPI seemed to cause diarrhea within a couple of days of taking it.  At first I thought it was just a side effect - the side effects do include diarrhea - but it worsened and worsened and several weeks later (after discontinuing the PPI) my doctor investigated coeliac disease!  To this day I will never know if that was a coincidence, and I wonder had I not taken a PPI would I have had diarrhea - indeed, would I have ever been diagnosed?  Because until then I had had no diarrhea, just had anxiety, mild neuro symptoms and also weird liver function tests.

A few years later I took omeprazole for what I thought was gastritis which again made me feel rough so I switched to Zantac.  A gastroenterologist did a TTG test and it turned out my antibodies were high - 80 or something.  Turns out it was probably because I was taking an iron supplement with gluten in it.  I was taking Florodix, not Florvital!  What a terrible mistake!

Then a couple of years back I had to take a PPI because of some antibiotics for a UTI - they felt like battery acid in my stomach.  It was at that point I found that Nexium was much better for me than omeprazole, no side effects at all.  I'm so grateful I was told to take Nexium as I would have had to give up the antibiotics mid course, but was instead able to finish the course.  Five or six days after coming of the antibiotics I stopped the PPIs.

This last time my GP prescribed them in October because I had a chronic dry cough and thought I had acid reflux but the scope a few weeks ago showed no evidence of any acid damage.  My gastro says more likely this reflux was caused by bile and other stomach contents. I've been Nexium for several weeks awaiting the scope which didn't make a huge difference.  Gaviscon did though, esp. when I took it after my meals and before bed time.  I've found that it has been quite easy to come off Nexium again, although  I've had to pop the odd tablet a couple of days as I think there was a bit of rebound.

But what I would say to people is get your chronic cough checked out.  I just knew that something was wrong - I've never had such a persistent irritation in my throat and at times it even felt as if it was in my lungs.  Like I had breathed in loads of feathers.  I don't have eosiophilic esophagitis but until it was disproved by 8 biopsies in that last scope you could have fooled me. I thought I must have an allergy.

My throat has been so irritated at times I have been coughing food back up.  I've even had to get an inhaler thinking I was getting asthma.   Strangely - cold air, dusty environments, scented candles at Christmas - all sorts of things that have never bothered me in the past were causing this terrible irritation in my throat and lungs when all this was at its worst.  I think the biggest help was using Gaviscon, going to bed with an empty stomach and a wedge pillow.

[Wheatwacked]

Mainstream doctors, regardless of specialty, do not consider nutritional status when diagnosing your symptoms. They are not trained in it and don't get reimbursed by the insurance for treating it. Most of the symptoms described above could be the result of deficiencies, possibly caused by celiac disease that has gone long term untreated. Many could be side effects of drugs to treat one symptom, but causes new symptoms, which has its own set of drugs with their own side effects, ad Infinium.  For example if you present with SAD (Seasonal Affective Disorder) this is what the Mayo Clinic says; 

Quote

Treatment for SAD may include light therapy (phototherapy), medications and psychotherapy.

and totally ignore the fact that you are likely vitamin D deficient. Insurance will decline paying for a vitamin D test and the minimum RDA for D only takes into account for Rickets anyway, so they will gladly pay for meds, but not vitamin D.

[CottenCandyDream]

Yes for the past few months after i got off antibiotics my acid reflex has been terrible I have burning and I can't eat anything without burping for hours later. I've been put on PPI I hope this helps I barely eat anymore, I've been drinking water to make up for the lack of food. I've lost 20 pounds in just a month.  I know how you feel.

[cristiana]

8 hours ago, CottenCandyDream said:

Yes for the past few months after i got off antibiotics my acid reflex has been terrible I have burning and I can't eat anything without burping for hours later. I've been put on PPI I hope this helps I barely eat anymore, I've been drinking water to make up for the lack of food. I've lost 20 pounds in just a month.  I know how you feel.

If you are also getting a burning stomach, see below an old thread that I began when I had what I thought were gastritis symptoms in 2017.  

https://www.celiac.com/forums/topic/118711-gastritis-or-glutening-slippery-elm/

Since then, I've had gastritis and reflux at the same time caused by a course of antibiotics for a UTI.  The antibiotics felt like I had just swallowed battery acid each time I took them!  Awful! The tips that I learned in the above thread really helped, then, and still do - any time my stomach feels a bit sore.

More recently (this thread) I've had just reflux, the silent kind!  The most helpful thing for this has been Gaviscon, as recommended by my gastroenterologist, esp. last thing at night, avoiding certain foods that cause reflux and using a wedge pillow. I now feel so much better - so there is hope! I'm not using Gaviscon now, nor the wedge pillow, but I'm keeping them to one side in case.  Camomile tea (made quite strong) is also now part of my arsenal.  I've had to get used to it but I find it really helps.

Incidentally, I nearly stopped taking Gaviscon at first because I found it made my throat feel more tickly and irritated.  But I persevered and it helped in the end.

I do hope you feel better soon.

 

 

 

 

[NNowak]

I’ve had erosive esophagitis since 2007. The GI put me on a PPI at that time. In 2017 I had an autoimmune flare that is just now resolving with the diagnosis of 2 additional autoimmune diseases. A different GI did an EDG and colonoscopy, discovering a worsened state of esophagitis, hiatal hernia and peptic duodenitis. His comments to my husband while I was still sedated was that I needed to be on a PPI. When I called the GIs office to ask what else I should do, as clearly the PPI wasn’t working 12 years later, he was most unhelpful. I was 30 pounds underweight, and the GI said I was doing it on purpose and dismissed me. I couldn’t eat much of anything without stomach pain near the duodenum. Occasionally the pain goes into the right side of my chest, but it’s always on the right side of my stomach. 

I pulled out all my nutrition and holistic research and decided to see a functional medicine doctor. She put me on OrthoMolecular DGL (in place of the PPI) and Digestzyme. The DGL is nothing short of a miracle, no PPI side effects and totally natural. PPIs are only supposed to be used for 8 weeks, not long term, as it alters your ability to digest and absorb nutrients. I also sleep inclined on several pillows and have found a low histamine diet to be favorable. Vitamin D is essential and transdermal magnesium to healing the GI. If you haven’t had your Bs checked, I highly recommend it as your cells will be compromised if you are deficient.

I hope you feel better soon!

[cristiana]

UPDATE

I've been asked for an update by someone who sent a PM, but It's best to post health info publicly because this means fellow Mods can make sure I'm staying on the straight and narrow path with any advice I'm giving out!

Alex...   Yes, my symptoms did slowly improve.  They started around October, from memory.  Approaching Christmas I remember the feeling as if there were feathers irritating my chest in my lower throat and in my lungs, and things like scented candles made things even worse.  I had a endoscopy and they found nothing wrong, I also had a chest X-Ray because of the cough which lasted more than six weeks and nothing showed.

In the end I think the end it settled because I was doing the following:

• following a reflux/gastritis diet  (you can find lots of these diets on line, which focus on a low fat, low acidndiet, avoiding spices etc, avoiding alcohol and coffee etc)
• not eating three hours before I went to bed, which means going to bed with an empty stomach
• sleeping with a wedge pillow, which I still do, five years on...
• taking Gaviscon Advanced before bedtime, and after meals (not much, just a large teaspoon)
• using a blue Salbutamol inhaler, I think it was two puffs in the morning and two puffs at night.

I felt a lot better after about three or four months.  I then only used the inhaler and Gaviscon when I had to, if I started to feel my chest was getting irritated again.

I find keeping on top of reflux symptoms the way forward.  My gastroenterologist told me that the cough was to do with reflux/gasses in the gut coming up that can irritate the throat and airways and the fact I noticed improvement when using Gaviscon showed that that was what was causing it, because it provides a barrier that stops this happening. From the Gaviscon UK website:

"It creates a protective barrier or raft over the Stomach contents (which is mostly acid, but also pepsin and bile)."

https://www.gaviscon.co.uk/#:~:text=It creates a protective barrier,water and other neutral substances.

This protective barrier stopped the contents of my stomach from coming up to irritate my throat, as I understand it, and allowed any irritation in my throat to settle.

I do still take Gaviscon if I eat a late meal but not every day. 

I hope this helps.  Do come back to me on this thread if I can help further.

Cristiana

 

 

Edited December 19 by cristiana