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What Could It Be?

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Greedyfly | 22:14 Wed 05th Mar 2014 | Body & Soul
13 Answers
Sorry this will be long.

As some of you will know I have been having problems with Acid Reflux for some time now. I was diagnosed by Endoscopy with having a small Hiatal Hernia, when this was diagnosed it was suggested surgery would be the best option if meds didn't help.

I have taken every drug available and at the highest dosage for the most part and had little to no relief. My GP feels surgery would be the best bet and referred me to see a Gastro. Gastro believes for some reason that it isn't reflux and that I have IBS - I have no stomach problems or bowel problems. I was getting some stomach pain but this has since stopped now I am not on any meds.

Gastro has referred me to see an IBS nurse, who I see soon and after much persuading sent me to see an ENT and a general surgeon. I went to see ENT recently and he confirmed that he thought I was suffering with Acid Reflux also. He then had a look at my vocal chords with an endoscope and told me there was absolutely no damage and if I was getting the amount of reflux I say I am there would be some damage. He has confirmed I do not have an ENT problem and has discharged me. He said I was very complex and that I was in danger of having too many opinions, but I think we are already there as the Gastro keeps sending me to every dept she can think of.

I have varying problems. I throat clear all day and during the night, I cough constantly which after some time becomes chesty. I have daily chest pain which is left sided and very sharp, often when I breathe in - this has recently seen me in A&E as it got so bad one day that I couldn't even walk the pain was so bad. I have a continuous sore throat and my voice is scratchy due to the battering it gets daily from the coughing etc... I sometimes have problems swallowing and have heartburn virtually all day which gets worse after food.

I had a 24 hr PH Manometry test to test Acid production and this came back negative, when I went for this test the guy doing it was so surprised on the dosage of 120mgs Omeprazole that he said it was likely the test would come back negative. Even though you stop taking the meds a week before. ENT confirmed this was very likely also due to rebound?!

I am so sick of feeling ill all day every day and I am very frustrated that the tests keep coming back negative and it feels like no one believes me now. I don't want to have the surgery and obviously await the general surgeons opinion but it is likely he will discharge me also as there is currently no evidence that I have acid reflux. I am currently on no medication as the Gastro wanted to see how things went off the drugs. Things have obviously got worse and Gaviscon etc does nothing to alleviate symptoms.

What else can it be?

I have considered going private as this is a very slow process through the NHS but I can't really afford to and I don't know who to see as no one knows what is wrong with me.

I have changed my diet dramatically as there is very little I can eat that doesn't upset the reflux I feel. I obviously have other appointments and people to see but up to now I have got the same response from everyone other than my GP and the Endoscopist.

Do you have any suggestions on what else it could be? What else can I look into? What would you do regarding treatment and where to go next?

I really can't cope with feeling this way all the time, I am only in my early thirties and am thoroughly miserable.

Thanks for your time

GF

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Sorry to hear this, it sounds really miserable. I have absolutely no knowledge in this area but has anyone looked at the possibility that it might be stress/anxiety or psychological in nature? Don't take that the wrong way, I'm just clutching at straws as it seems medical diagnosis has not yet been successful.
Question Author
Thanks Prudie. It has been suggested and I am open to the idea. I am a highly stressed person in general to be honest but nothing has changed over the last two years besides my getting married and to be honest it has got worse since that stress is over so i'm not sure it is that. I am awaiting to see a therapist to help with the stress also so if it is linked hopefully it will improve but who knows.
I do hope you get some relief. I'm also quite stressy and have all sorts of aches and pains that come and go. I've always thought my stress was due to deep rooted things I'm not aware of rather than obvious things like wedding/divorce/death in family etc etc. Sqad will probably come along tomorrow with a far more plausible view!!
Sorry to hear of your troubles. Hope something helpful come your way soon.

Have you ever thought about alternative treatment? There was/is someone on here who knows a lot about this type of thing. I forgot who they are, hope they show up.

I know someone who suffered from similar health problems are you presently are undergoing. They tried every treatment around and in the end after many test performed, it turned out that they were allergic to many different foods, fruits, drinks etc.

All the best to you.
Question Author
Thanks Society. I've had some allergy tests but not all. Having cut everything really that I know irritates besides dairy I think they just cause acid rather than an Allergy but I wi ask about this next time.
sheesh, you poor thing. I'd only like to say that I had acid reflux - not badly but it was my dentist who told me about it. He said my teeth were being eaten away from the back. Shame previous dentists hadn't noticed it while I could still have saved them. Anyway, you could ask a dentist if he can see any such signs.

It might well be worth going private if you can get the money together. What better reason to spend it than to stop your life being made a misery?
I agree entirely with the comments made by Prudie.
I think that an organic cause has been eliminated by the barrage of tests that have been ordered and have come back as normal.
I would suggest talking to your GP on the lines of this being a psychosomatic problem.
I see no point in "going private " at this stage.

I will give your problem more thought.
Agree re the psychology route too. It sounds very much like some of the anxiety issues experienced by our complex adolescent patients which often manifest in to stomach issues/reflux/vomitting or other physcial symptoms. Seeing either out psychology/psychotherapy team with their paediatrician overseeing often helps them so perhaps an approach like this can help you too.
Hi Greedy sorry to hear you're feeling so unwell. Have you considered Lactose intolerance? My Son had similar symptoms and has cut out all lactose products for the past 2 years and he feels great now. Just a thought xx

http://www.nhs.uk/Conditions/lactose-intolerance/Pages/Symptoms.aspx
Question Author
Thanks guys
Have you been tested for coeliac disease? (allergy to wheat, barley and rye). I used to suffer from serious heartburn. One consultant prescribed Omeprazole but I never took it. The only thing that worked was a heaped teaspoon of bicarb in water. After being diagnosed coeliac and going gluten free the heartburn completely disappeared. The main symptom is daily bowel probs not always. First stop is your gp.
If you feel you are not getting anywhere with conventional medicine, why not try a homeopath? I know sqad will moan, but I have a really good homeopath and she can pick things up that can be missed by doctors.
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Thanks Johnny37 but I have been tested for Coeliac Disease and it came back negative. Regardless if that I've cut a lot if bread based food out of my diet anyway. I think I will ask if I can tested for a dairy allergy just to be sure.

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