GI issues for nearly 2 years and no answers...Please help!!

Digestive health
1

Please can somebody help me??

I have suffered with gastrointestinal problems for almost 2 years now and after numerous tests I am still suffering and no nearer finding out whats going on.

Historically I had a cast iron stomach - could eat anything with no issues. However I started getting stomach pain which was in my upper abdomen just under my sternum and I can only describe it as feeling like I'd been punched and winded.

I also started to get bloating, really badly. To the point where I looked pregnant. It tended to be better in the morning and gradually got worse and worse througout the day to the point that in the evening it was really painful and uncomfortable.  Then I would get general pain across my whole abdo area and my stomach would be very noisy - gurgling etc. 

I've tried various diets: FODMAP, Gluten free, Lactose free etc etc and I can't find a food trigger it seems to vary every day and I'm not sure its related to food specifically.

When I first went to GP about it they did various blood tests and found I had a  vitamin B12 deficiency. I was then referred to hospital and had a gastroendoscopy and colonoscopy as well as biopsies for Coeliac. Everything was fine and they said it wasn't a bowel disease, there were no ulcers, no inflammation and it wasn't Coeliac or Pernicious Anaemia. I was diagnosed instead with IBS.

After doing some research I found that IBS does not cause B12 deficiency and also the tablets I was given for IBS - Mebeverine and Buscopan etc made no difference whatsoever. So I'm really doubting that diagnosis also I doubt suffer with constipation or diarrhea.

I've started seeing a new doctor and they have ran more blood tests: There is no indication of inflammation/infection and everything appears to be ok including Thyroid. The doctor thought it could be H Pylori. However the antigen stool test came back negative. 

I've since had an abdominal and pelvic ultrasound and again that has come back clear - no stones/cysts etc.

The doctor prescribed me Omoprezole 20 mg twice daily. That seemed to settle my stomach a little bit but it made me extremely nauseous so I had to drop it to once daily and that seemed to help the sickness and I'm not due to see the doctor until next week.

Other symptoms I have are: fatigue, muscle aches, dry itchy skin, joint aches,  Reynaud's disease, 'brain fog'. I've been having b12 injections 3 monthly so in theory none of the symptoms should be related to that

I am literally at my wits end. I'm at the point where I don't want to go out for meals with friends/family because I'll feel dreadful. Holidays get ruined because I get so badly bloated and pain after eating.

Does anybody have any ideas at all? Sorry its so long winded.

2

I have been suffering exactly the same as you describe everything in your write up.. I have not long finished the stage of omeprazole you mention with no relief at all... I have now been told to take lanzaprazole at a higher dose and the pain should die down within a few days which it hasn't.. I have now been back to the doctors and asked to see a specialist as nothing is working. Have you seen a specialist and have you tried taking probiotics ?

3

Hi thanks for your reply.

Its so frustrating not getting anywhere isn't it?

Is lanzaprozole stronger? Omeprazole made me feel very sick.

I've seen a gastrointestinal specialist who just told me I had IBS and discharged me. What other specialist could I see?

I'm not sure if I'm intolerant to any food or anything that could be causing it. I really don't know

I took probiotics initially because this all started after I had pneumonia and was prescribed a lot of antibiotics. I didn't feel a difference with the probiotics so I stopped taking them and then all the Coeliac, B12 stuff started so I never got round to looking into them. I've been doing some research on them and going to start taking them again I just need to find the best ones.

4

Yes very frustrating.. I'm really not sure if it is stronger.. I'm not sure on which other specialist you could see either, I'm currently waiting to see one and hope I don't receive a simple answer of IBS I will be devastated.

do you manage to work and hold down day to day activities? If so how do you get through each day with the pain?

Is it on a daily basis you have the pain or do you get long periods of time without any pain?

A lot of people mention stress and say it can play a big part in this... ?

5

Hi Sidd

Did your doc have an ESR blood test carried out Erythrocyte Sedimentation Rate blood test for inflammation in the body..all your symptoms point to inflammation...if you have not had an ESR test get your doc to get one done...best wishes..keep us posted.....m

6

Hi Sidd - this sounds almost identical to my daughter who has been unwell for the past 2 years - started with Gastro problems and has now developed inot the symptoms you describe.  In addition she has lost lots of weight and is now seriously underweight.  After each meal or snack she struggles with pain, bloating and gagging.  She is only 17 and her life has been taken over by this - she had to stop school and rarely goes out due to her pain and fatigue.  May i ask how old you are and whether you are in the UK?  My daughter has now also started to have blackouts and its all so worrying for us all.  If we get any answer it would be great if we could share them.  Thanks

7

What have the doctors said about this? Surely it can't be acceptable to let your daughter go on in this way, there has to be something.. 2017 all of the technology and operations that are performed and still they can't seem to find any sort of way to fix or even ease these awful stomach problems! I feel for all of you and if anyone gets any relief please let us know.. ive had this for 6 month now and I thought that was a long time.. I can only hope it does not go on for much longer.

8

HI Lilian thanks for your reply.

I have checked through my results and they don't seem to have done that test which is surprising. They've done other tests for inflammation on the full blood count but not that one.

Is that different?

9

Hi, thank you to your reply.

I'm 26 and live in England :-)

It's comforting to know other people are experiencing the same symptoms. It's so frustrating not being able to find the cause.

Have the doctors tested her for h pylori? I was so sure I had that my symptoms all fit

10

Hello :-)

I manage with work and just end up being uncomfortable. The pain never seems to be as bad at work but I find that with any illness I think I somehow manage to block it out and just get on with it.

I work shifts which probably doesn't help.

I'm at the point where I don't go out for food because that seems to make me worse than ever.

It's weird, it does ease off, I wouldn't say disappear but the bloating is no way near as bad. Sometimes it settles down for maybe a week or two. But then comes back.

I found it settled down on the low formal diet but then as I reintroduced foods it came back a few days later so I couldn't tell what triggered it. It's really weird.

The omeprazole have settled it a bit but made me really sick.

I think stress probably does make it worse, the problem is I struggle to tell the difference between what's stress and what's normal day to day life!

11

Hi Sidd

What your describing sounds more like cfs/me.

I suffer with this and like you have had lots of test come back negative. It also has symptoms with stomach discomfort, pain and bloating as you describe.

I also had a hernia that was not found on several occasions until I had a separate operation. This too may cause upper abdominal pain?

IBS can be an umbrella diagnosis when they can'take find anything else. It does sound like your really going though it at the moment. 😣

Hope you find somthing that helps soon. Take care and stay strong xx

12

Your symptoms do sound like IBS.  When nothing else is found, IBS is the diagnosis; I would accept your doctor's opinion because you have had many negative tests.  It is very common to doubt an IBS diagnosis.  It may well be you have IBS and a B12 deficiency and both may be unconnected with each orher.  Anxiety will make your symptoms worse.  Ask your doctor for a different medication; you may have to try several to find one that works because everyone's IBS is different.  Mebeverine is known not to work and to cause nasty side effects,  I had to stop Mebeverine, but Buscopan worked.  You can get joint pain with IBS too.

You can get itching and nausea with omeprazole.  I had this but it was mild and went away. You may also be reacting to the B12 injections.  Maybe ask for a different PPI/antacid that is less toxic on your stomach.  I take over the counter antacids and they work fine with no side effects.

13

ESR is often not done as it is highly unspecific,

you watch the blood cells in non-coagulating vertical blood column settling,

how fast they 'fall' down within an hour due to gravity (sometimes read again after 2 hours).

Very old test, very easy, very cheap test, very unspecific therefore too.

Yet usually it is done at least once as a basic test together with a full (red and white cell) blood count. If it was very high or very low, at least it prompts to look a little further unless unspecific reasons have provided a false reading. It is good to monitor Lupus or bone infections, but other than that usually the quicker reacting CRP is preferred.

The problem same like with measuring fever: it does not tell you WHERE the problem is, why it is elevated

and CRP, white blood cell count are the same blood parameter thing:

looking for inflammation without the answer where it sits.

An elevated, quicker settlement of red blood cells (ESR) is mostly due to inflammation (different proteins allow quicker floating down), in anemia of course (since you have less and lighter cells, plain gravity related), infection or when pregnant or simply older age. When highly elevated, there would be a severe infection going on or rheuma or arteritis.

My daughter btw had normal CRP, normal white blood cell count and once an ESR done -never repeated again as CRP should be more telling about inflammation-, also normal and is half dying in abdominal pain with no normal life anymore, unpredictable from day to day if even school was possible.....

I don't think you missed much having no ESR, especially if CRP and white blood cells were measured. (?)

So see ESR like an old mercury fever thermometer:

You can measure if normal, but it won't tell you as to why if it wasn't normal and if only slightly out of range, no one will be concerned.

See CRP like a new quick electronic thermometer, hence preferred.

Best of luck!

Was your calprotectin in stool ever measured?

14

Hi Sidd

An ESR blood test will be carried out along with an ANA blood test and a CRP blood test:-

ESR: Erythrocyte Sedimentstion Rate blood test.

ANA:- Anti-Nuclear Antibodies blood test.

CRP:- C-Reactive Protein blood test.

If all three show high levels then this will indicate inflammation in the body. It cannot tell you what is causing the inflammation..although a high ANA will infdicate the immune system is overeacting and attacking parts of your body. This is where a Rheumatologist comes in..Your doc will refer you to a Rheumatologist and then you will get a diagnosis as to what the problem is..this is the procedure in UK..i cannot speak for other countries and their procedures....if you have not had these blood tests ask your doc to have them checked....best wishes...keep us posted..m

15

Hi Sidd

You mentioned you have dry itchy skin, joint aches and Raynaulds Disease..which are all connected to Lupus and Scleroderma which are inflammatory diseases so you definitely need to have an ESR, ANA and CRP test for inflammation..best wishes....keep us updated..

16

? We never did ESR together with an ANA automatically

in the lab I worked for many years,

only however doc crossed on tests.

ESR was rather ordered with a full blood count as a 'baseline' screen test as these need EDTA blood (not clotted) whereas CRP and ANA are done from serum (clotted) usually. Might depend on country. My work experience in other European country and Australia.

ANA is hugely unspecific too and clear positive tests might indicate more autoimmune investigation, up to titer 1:160 is pretty usual for ANA and 2 titer steps are easily 'eye' factors of the scientist looking at it ... so please no surprise if ANA titers do jump from one test to the other within limits.

I also did them for many years (immunofluroresence microscopy; beautiful, but is it only green -neg- or still fluorescent positive? Always a big question and from day to day slightly different result possible....titers go 1:80, 1:160, 1:320, 1:640, 1:1280, 1:2560, 1:5120....imagine you have a 1:160 and next time a 1:640, sounds like a big step, but is only 2 dilutions!!!....and easily possible as eyes are deciving, it actually could be the same level in blood. It needs to be retested to see fluctuations and they need to be bigger than 2 titer steps.).

About 40% of population (where I am, Australia) is positive in ANA without symptoms.....

if really clearly positive a rheumatologist will warrant more autoimmune testing, but please be not disappointed as with an ANA of 1:80 nothing will happen...it's even considered negative.

CRP though seems a very good inflammation marker.

Much depends on your physical symptoms rather than on lab parameters. Remember there is hardly anything 100% in labs,

many tests (like ANA) are subject to specifity and sensitivity, nothing 100%. Other tests like counts or enzyme levels have a 'normal' range...which is based on 95% of healthy feeling population with this or that test (labs use different methods, hence ref ranges are different), and meaning: 5% are normal and outside of range. Slight outside ranges therefore often neglected, too.

Lab values can show and be very helpful, in the total picture,

but are not the Holy Grail.

A highly elevated CRP is very much useful, of course,

a huge ANA, too, an ESR falling many many dozenzs mm per hour as well, and needs further investigation as it does not say as to why. Even worse are antibody for diseases, there is hardly a test covering 100% specifity (false positive possible) and 100% sensitivity (flase negative possible).

Hence persistence, whole picture, other investigations, symptoms, imaging is very very important.

All all the best!!!

 

17

hi thank you for that it's very interesting.

My CRP was measured back in 2015 and was 1mg/l with the normal range being 0-7mg/l so it's not been tested again. Same for my white blood cells they were within normal.

No they didn't test calproctein just tested for Coeliac? As far as I'm aware anyway?

18

Hi Lilian,

The GP said it's primary Reynauds so is hereditary and not caused by anything underlying.

I had the CRP done in 2015 and my result was 1 mg/l with the range being 0mg/l - 7mg/l so no signs of inflammation.

It's a mystery

19

Hi Pippa thanks for your reply.

It's not that I'm doubting it I just think that too often it's used as a diagnosis so further investigation isn't done.

The IBS symptoms and the b12 started at the same time and prior to that I was always very healthy.

None of the IBS medication has worked whatsoever nor have the diets which makes me think something else is causing the IBS symptoms. Either way I can't go on like this

20

Hi thank you so much for your reply.

I had never even considered this but now I come to think of it fatigue is my pain symtptom alongside the bloating so that's very interesting.

I'll have to do some more research.

:-)