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Where do I go from here? No evidence of reflux found

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GERD & Acid Reflux
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Daxter
Regular Member
Joined : May 2013
Posts : 406
Posted 7/22/2014 3:09 AM (GMT -7)
Some results from my latest medical tests have arrived, which has lead to some good and bad things. I thought I'd run through them, as I'd be interested in hearing people's opinions about what is happening to me and what I should do next.

Good:

- My manometry and pH impedance studies returned clear. They say I'm swallowing air, but not bringing up reflux contents.
- I may have access to a new specialist once I get a referral for a second opinion.
- There is more evidence I MAY not have LPR now.
- The makers of "Peptest" kits for LPR say I do not have reflux.

Bad:

- Not conclusive evidence; it may be I didn't have reflux at that point in time.
- My symptoms are quite bad; I struggle to breath due to mucus blocking my airways and I have to gasp for air. Food also gets stuck in the top of my throat. Most of it begins as soon as I swallow.
- Developed a tight chest after eating too.
- I can't deny my symptoms got worse after binging on bad foods around my birthday. Ties in too well to call it a coincidence.
- This test has lead to a lot more people saying it's all in my head.
- There is still some minor relief I get from Gaviscon Advance, but only every so often. Sometimes it actually makes things worse (as does alkaline water).


Things are still quite scary at the moment due to my breathing problems. I will probably push things further, but I've been left very confused as to what my body is trying to tell me. ;( I really, sincerely hope it's not reflux, because if it is, it's a living nightmare to both diagnose and live with.

Post Edited (Daxter) : 7/22/2014 6:07:20 AM (GMT-6)

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Pat Tall
Veteran Member
Joined : Aug 2012
Posts : 950
Posted 7/22/2014 9:38 AM (GMT -7)
Daxter I hurt for you and the medical mystery is so confusing as to what the heck is going on.

Have you considered the ALCAT test for food sensitivity. We are working through it now and our results were quite astounding as to how common everyday foods can be trigger to problems. If you want, I can send link but don't want to seem like an advertisement. We selected the Comprehensive 1 panel. Requires a blood draw and overnight shipping. They do it all over the world. We learned from it and are learning so much from the results. Yes,-- we kept a food diary for quite a long time but this doctor ordered ALCAT test seemed right way to go . We too are at wits end.
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Pat Tall
Veteran Member
Joined : Aug 2012
Posts : 950
Posted 7/22/2014 9:40 AM (GMT -7)
https://www.alcat.com/test_panels/
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1039smooth
Veteran Member
Joined : Sep 2013
Posts : 2147
Posted 7/22/2014 2:02 PM (GMT -7)
Thanks for the link, Pat.

Dax, I get short of breath sometimes and I'm not sure why. Makes talking difficult.
LapNissen Fundoplication, 8/9/13
GERD, Anxiety, Depression
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Trotters
Regular Member
Joined : Jun 2014
Posts : 332
Posted 7/22/2014 2:52 PM (GMT -7)
Daxter can I ask if you do t kind where and who performed your impedance test and would you recommend him/her.

Many thanks
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Daxter
Regular Member
Joined : May 2013
Posts : 406
Posted 7/23/2014 1:38 AM (GMT -7)

Trotters said...
Daxter can I ask if you do t kind where and who performed your impedance test and would you recommend him/her.

Many thanks

Trotters; I went to Dr Prezemioslo (Pre-zeh-mee-oz-lo pronounced, everyone gets it wrong-!) at the Spire Bristol, privately. He gave me the Restech, then sent me to the Bristol Royal Infirmary for the impedance. As the only doctor I've ever see to know the ins and outs of LPR, I do highly recommend him. Go armed with evidence like Peptests or diet changes and he'll be even better.
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Daxter
Regular Member
Joined : May 2013
Posts : 406
Posted 7/23/2014 2:11 AM (GMT -7)
Sorry to double post but I figured out something important. My symptoms can change in a matter of minutes based on whether or not I use Gaviscon Advance. They're equally distressing, but I keep bouncing between them, I just have no idea why:

With Gaviscon Advance:
- Extremy tight throat (much less mucus)
- More burping
- Hurts/hard to swallow

Without Gaviscon Advance:
- Thick, heavy amounts of post nasal drip
- Difficulty breathing
- Tight chest
- Some difficulty swallowing (no pain)

A single gulp of alkaline water can bring in the mucus/tight chest/breathing problems on in seconds, but Gaviscon Advance sometimes takes a few uses to make things change. Why would 2 things reknowned for LPR treatment make me worse in different ways?!

Also I wake up perfectly fine in the morning, until I swallow, which kick-starts the symptoms. No clue why.

Post Edited (Daxter) : 7/23/2014 3:38:00 AM (GMT-6)

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Trotters
Regular Member
Joined : Jun 2014
Posts : 332
Posted 7/23/2014 12:04 PM (GMT -7)
Thanks for your response daxter. I'm sorry to hear you are still no closer to a resolution.

It's time consuming, expensive and frustrating trying to get a proper diagnosis and a way of managing this awful disease.
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Trotters
Regular Member
Joined : Jun 2014
Posts : 332
Posted 7/23/2014 12:11 PM (GMT -7)
Ps I do know a little of what you are experiencing I have lots of mucus and tight chest. It takes about 3 hours every morning for the symptoms to ease and in this time I'm constant coughing and clearing my upper airways. I have exactly the same sensation as soon as I eat to. Instant phlegm in my upper airways. I've seen a respiratory doc who has indeed told me he thinks it's acid reflux triggering a reaction in my lungs. Try getting the reflux guy to see it that way. Plus I've had a nissen too! Just a thought.... Gaviscon advance is quite potent could it actually be irritating an already sensitive throat? Just a thought
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GC1pink
Veteran Member
Joined : Nov 2012
Posts : 532
Posted 7/23/2014 12:46 PM (GMT -7)
Daxter,

If you go on the forts charity.org.uk you will find details of a clinical trial to be run in London for reflux not cured by ppi's might be worth contacting them?

Hope you feel better soon,

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