Stomach, Lungs, Pain,,,??????

[RayB]

Hello all,,, haven't been around much of late part of the reason being I have been quite unwell from before Xmas.

It is hard to describe the symptoms exhaustion, breathing difficulty that seemed to fluctuate, at times the chest can rattle a lot, and pain that I just can't pinpoint, could be the stomach could be the lungs, all I can say with certainty is it is inside. Ohh dear lord the pain at the bottom of the ribs, it was almost impossible to lie down on my side!

When coughing it had a bloody metallic taste.

Stomach pains, Rib pain,,, I questioned Duodenum problems,, Diaphragm problems.

At one stage the stomach rumbling, cramps and trots the the bathroom were to say the least exemplary.

Dr sent me for a chest X-ray back in Jan,,, Nothing

Referred me to a medical consultant,, who palpated my stomach which was really tender listened to my chest and said (confidently to my face) there isn't a problem.

He sent me for a ODG (reluctantly) and it all looked good apparently!

I was using Omeprozol which sort of worked the Dr switched it to Lansoprazole which was much better and provided better relief.

A relative who is a nurse and celiac asked if they had suggested celiac or food allergy,,,, NO

after a bit of research and desperation I went onto a diet of boiled veg salad balsamic vinegar olive oil.

Nothing processed, No Dairy, No grain,,,, I know I really wanted a bar of dairy milk and a packet of crisps for breakfast but had a a plate of steamed broccoli and carrots instead,,,, duh!

The symptoms have calmed but I am still on the Lansoprazole and quite dependant on it,,, unfortunately, but I am hoping I will be able to stop it eventually.

I am literaly afraid to step outside of my present diet, If I don't cook it and know what is in it I don't eat it, I got some chips out of the chipshop a few weeks ago and suffered bad after,,, Called Patrica and she said well they cook battered fish in the same oil so there is gluten in the oil so It is in the chips,, and there is also gluten in malt vinegar. I tied adding an egg to the salad a few days ago (Oh it was lovely) I was in pain the next day with the cough and chest rattling back. I tried a bit of gluten free soy sauce with stir fried veg and you guessed it pain, cough, rattle. I also eat chicken and I can spice the stuff up no end if I like without problems.

I am left that I don't really know what it is but at least I have learnt a bit and hopefully with diligence and one step at a time will be able to widen my diet and get off the stomach meds.

The thing is the medical system has been pretty unhelpful through it all and really I have been quite lucky,, If Patrica had not suggested food allergy I would be at the mercy of a Dr who shruggs the shoulders and looks blankly with pen in hand.

As you have probably realised I am a person who will go to any length to get to the root of the problem,, no half measures.

My reason in writing this is not looking for sympathy and the “sorry to hear you have been unwell” stuff but just to inform you in the hope that my experience may be of use to someone else who is at the mercy of what I consider to be growing incompetence in a very flawed medical system.

If this helps one person I have accomplished something.

Best Wishes, Ray

[Fibrofoggiest]

Golly Ray, you have my complete admiration for your tenacity at trying to get to the root of the problem. Thank goodness Patricia mentioned coeliac as a possibility and I know all too well the feeling of not wanting step outside of the safety zone you have found with what you are able to eat, though mine is for different reasons, but understanding is still there.

Kudos to you for tolerating and then challenging the medical system and particularly your rather inept GP - it's amazing how some choose a career and then spend a lot of their time just trying to get rid of patients because they don't fall into a "box".

I'm sending you huge amounts of positive vibes to keep you going, though you are doing a very good job yourself 😃😃😃

Foggy x

[RayB in reply to Fibrofoggiest]

Foggy, I don't know that I am actually coeliac, I probably never will as I would have to be taking gluten for 6 weeks before a biopsy and there is no way in the world I could backtrack to do that,, again medical incompetence me thinks!

Anyway that bit doesn't matter as the only thing that matters is that I progress by whatever means.

I do know that I cannot tolerate wheat or dairy at this stage and the rest will be a cautious one step at a time trial to see how it goes!

The whole experience makes me wonder just now many people are going around with whatever diagnosis the Dr has plucked out while they are allergic to something they don't know about.

Just because a medication calms something down dose not mean you are better, they only treat symptoms at best!

Best Wishes, Ray

[lou1065]

I was in the same boat for ages, my daughter, also a nurse suggested a food sensitivity as my stomach bloated by around eight inches by the end of each day. My GP was very helpful and now I can no longer have dairy, I can use lactose free and do so sparingly, I chose to go gluten free again an improvement and now I keep a food diary. I also have an allergy to beans and tree nuts so avoid all of them. I was tested for all apart from the gluten that was a personal thing. x

[RayB in reply to lou1065]

Lou,

I worried all night about the endoscopy but went through with it so I could get to the bottom of whatever is going on.

It was a strange sensation but to be honest the worst bit was feeling that my throat was numb. I would never worry about another one if it is suggested.

In order to test for Coeliac you have to be consuming gluten for 6 weeks before a biopsy and there is just no way I could suffer the eating the stuff again to be tested!

Your story is another good example of the fact that your Dr didn't suggest the problem.

Best Wishes, Ray

[rosewine]

Thank you for sharing your story Ray. My friend who has Coeliac disease reads every label before buying and even takes her own gravy mix if she is going out for a meal. As long as she is diligent she is okay but one little slip on the diet front means her running back and forth to the toilet for the next few days.

If your diet is working for you I would stay on it for the time being until you are really feeling the benefit and then perhaps slowly try reintroducing things one at a time so you know what it is that causes you a bad reaction or that safely fits in with your new plan. Lansaprazole is one medication I would definately not like to be without as if I miss even one dose I feel awful. Hope that things continue to improve for you.x

[RayB in reply to rosewine]

Rosewine,

I have read labels for years,, but I swear they are making the print so small now I need a magnifying glass.

Yes the Lansaprazole is great however I do want of it as soon as possible.

The downside of all PPI meds is the fact that it stops the stomach being an acidic environment, it must be acidic to break down adsorb most of the minerals.

Best Wishes, Ray

[LynetteR]

Your having a tough time, my daughter is going through the same troubles, we suspect coeliac as my mum, her grandmother has it. She sees the consultant for first time this week. I really hope they find a diagnosis for her. We deliberately haven't cut out gluten from her diet, because if you don't eat it they cannot diagnose you. So she is suffering badly. The consultant better not shrug his shoulders at my daughter, haha, I will push this for her until we know what's wrong. Thanks for your post, really interesting.....x

[RayB in reply to LynetteR]

Lynette,,

I stopped in desperation as I was told I would probably have to wait 30 weeks for the ODG/biopsy.

I just couldn't go on as I was, I stopped all wheat and dairy and seen an immediate improvement and there was no way I could go back.

Hopefully the consultant will list her for a priority ODG and not a routine one!

Best Wishes, Ray

[LynetteR]

Rosewine, I felt as though you were talking about my mum, haha, she is just like that with her coeliac, terrible allergy 😞....x