Getting Tested In The Uk

[nikkijayne28]

Hi guys,

 

I'm going to see my GP on Wednesday morning in the hopes of finally getting to the bottom of my constant stomach issues.

 

For about ten years I've suffered with stomach aches - when I was younger I had chronic diarrhoea, now it's turned to constipation. Unexplained tummy aches that can either be high up around my stomach, or low down like period pains. Awful bloating - my waist regularly measures 2" larger in the evening versus the morning. Headaches, constantly being cold, and sometimes I get a feeling of 'being out of it'. I also have LPR (acid reflux), diagnosed earlier this year.

 

A few months ago I went gluten free to see if that helped my problems, and it did, but I didn't really notice it at the time. Then it was my birthday so bread, cakes, beer made their way back into my life, and suddenly I remembered what it's like to want to fall asleep at 3pm. The stomach aches started back up, as have the dull headaches. My bloating is more than ever and I constantly feel sluggish. The only thing that has changed in my diet is eating 2 pieces of toast in the morning (which I have started to do daily because I know I have to be eating it for the tests to be reliable).

 

The doctor I'm seeing is lovely but I was just wondering what other people's experiences were with getting tested in the UK? The one thing that scares me is being thought of as a hypochondriac and all my problems being dismissed as IBS, which they have been in the past. 

[cristiana]

Hi nikkijayne

 

Welcome to the forum and to the two different spellings of celiac/coeliac.   I will go with the British version today!

 

My symptoms were not all gastric.  Looking back there were various weird neurological things happening and my 'nervous stomach' which only played up now and again I thought was perhaps just a touch of IBS.   Eventually, however, my gastric problems really took over.  I think my GP said at the time they consider something is amiss when one has had a change in bowel habit for more than six weeks.  Well finally I had got to the point where I had had diarrhea for six weeks so I was given several blood tests and one happened to be for coeliac disease.   I didn't even realise she was putting me in for one!  Since then my own children have had tummy aches and the like and I have actually requested a coeliac test for both which I was not denied.  

 

I would say it should be as simple for you as requesting a test, explaining your recent history. There is a lot in the medical journals about coeliac disease so the doctors are constantly being reminded how under-diagnosed it is and how important diagnosis is.  I would be very surprised if you were denied it.  

A friend of mine recently had all the tests (including an endoscopy) and they all came back negative.   She at that point gave up gluten anyway and guess what - is feeling much better.   She has something called non coeliac gluten sensitivity.  That may be something to consider if your blood tests come back negative.

 

However, you are quite right in keeping up the gluten consumption until you do have your tests.   That is very important.

 

Let us know how you get on.

[cristiana]

Sorry - I have just re-read your post and missed that before your problems have been dismissed as IBS.   That is more difficult.  However, it may just be worth demanding one (in as nice a way as possible!).    I just feel that the climate here is changing a bit, perhaps even since you last went in about your IBS, and doctors are being encouraged to "think coeliac" more than before.   

[nvsmom]

I think being called a hypochondriac should be a symptom of celiac disease - there is a reason it takes ten years for a celiac to get a diagnosis! LOL. Same thing with IBS, probably half of us have been told we had that. Try not to minimize your symptoms when you see the doctor. Bring the list you made here and I am pretty sure that he will see the logic of testing for celiac disease.

Get as many tests run as possible. The tests can miss celiacs so the more you have done the better. Request these tests if you can: tTG IgA,tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA, and maybe the older and less reliable AGA IgA and AGA IgG.

Good luck with the docs and welcome to the board.

[oukethelousa]

Hi Nikkijayne

 

As you can see from my own thread, I've just joined up and am at a similar stage, also in the UK. I was surprised at the reaction of my doctor, given the lack of symptoms. In any case, I expected either 'probably nothing to worry about' or 'actually, it might be serious', but she didn't say anything at all. So I asked if it was possible to be tested, to which she said 'sure, no problem' and printed off a form. She said that I could have it done that day (there's a blood test facility in the practice) which made me wonder whether she'd been paying attention: I'd said that I'd only been back on gluten for four weeks, so was thinking that I should wait another two weeks at least for the test.  

 

So it was all very easy, though perhaps that was the sheer luck of the draw. In any case, I don't know which tests have been ordered (the form just says 'coeliac screen') so I'm hoping that when they're done, they'll let me have a printout of the results so I know which ones they were and what the numbers actually mean. 

[nikkijayne28]

Hi oukethelousa!

 

I've just read your post and we seem to have a lot in common regards symptoms! That's pretty reassuring that your doctor was so easy to persuade, do let me know how you get on.

[cristiana]

nikkijayne and oukethelousa

 

Hello both.  I have just found a really helpful resource that might interest you.    I have also posted it under a separate topic, "Think Coeliac" in the International Room.

 

It seems that 36% of celiac disease patients are currently incorrectly diagosed with IBS.  It also lists all the tests advised under the National Institute for Health and Care Excellence (NICE) Guidelines.

 

I wish you both well.  

 

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[nikkijayne28]

Thought I'd post an update! Went to the doctor yesterday and she was really understanding - she said it sounds like a textbook case of IBS with NCGS, but she's sending me off for blood tests for coeliac, anaemia and thyroid problems. I can't have these tested for another 2 weeks as she's of the school of '4 slices of bread every day for 8 weeks' - this is hard as I rarely ate that much gluten prior to going gluten-free! I'm trying my best but good god my stomach is in a world of pain. Not fun!

 

The good thing is that she's a doctor who accepts that non-coeliac gluten sensitivity is a real thing, which is awesome

[cristiana]

Brilliant news nikkijayne.  Your doctor sounds fab.   All I can say is make the most of eating all those things you think you will miss once you go gluten-free.  In the run up to my endoscopy I had Weetabix for breakfast, McVities Penguins, the works.... and interestingly with all that, the most incredible headaches!  A tense pain in the centre of the forehead that I had frequently endured as a child.

 

Funny as until the gluten challenge I had never associated that symptom with my Coeliac disease - now I am gluten-free I hardly ever need to take a paracetamol for a headache.  And I always thought it was cheese that was causing the migraines when I used to eat cheese sandwiches!  

 

Let us know how you get on.  For me, the blood test results took three weeks to come through - it might be a bit different where you live, but worth the wait.

[nvsmom]

Your doctor sounds very good!    Enjoy a Guiness and a stout for me in the next few weeks.