Not coeliac, what do I do next?

[bottersnikes]

Without going into my full medical history, I have had recurring IBS for about 20 years. Two years ago, I had to have several courses of metranidazole antibiotics.
The courses made me feel very ill but they cleared up the infection so I wasn't too worried.
Since then, I have daily stomach pains within 2 hours of eating and seem unable to eat most of my favourite foods (chocolate, custard, cakes etc) without pains and IBS-like symptoms afterwards. My diet is otherwise very healthy, plenty of vegetables, fish etc.
A recent coeliac test was negative. I have been referred to a dietitian, who has recommended trying Symprove probiotics for a few weeks. On top of that, I have cut out dairy, which has alleviated some of my symptoms, but not all.

Does this sound familiar to anyone? Do I persist with a medicalised approach, i.e. further testing, biopsies, to try and work out what is causing my symptoms, or do I just cut out the stuff that seems to be the worst triggers and make sure my diet is as healthy as possible?

The NHS is wonderful, but soooo slow and I'm impatient! I just want to feel better.

That felt like a long whinge, but I would really appreciate any suggestions that anyone might have who has gone through this too.

Thank you :)

[MayfairMummy]

Bottersnikes, we are a symprove household here (though we have allergies too); i know people that it really helps.

Unfortunately, medicalised tests are all the docs can really do, but aren't necessarily the gold standard in identifying why there is a problem.

Suggest you start a food diary, cut out all foods that seem to cause an issue so you are on a very basic diet for a few weeks, then slowly introduce them one by one, taking a record of what you ate when, and when symptoms show up (symptoms aren't always as soon as you think; some take days). I won't lie, it's a complete annoying faff, but once it's done, you'll have a clear list of what is causing you issues, what exactly those issues are, and you may find that cutting out those specific foods increases your quality of life dramatically :)

Of course, if you instead find that all food is causing an issue, you'll have a clear record of it and can take it to the doctor, which will mean they'll be looking for something different than a specific food related illness (like celiac)...

good luck

[WiIdfire]

Have a read of the IBS info leaflet on patient.co.uk. There are lots of good suggstions of places to start, and you may find something to help you.

[MiloCat]

My dad has been investigated for coeliacs but tests were negative and the peads gastro is now testing her for a lactose and fructose intolerance.

[Idontknowwhatitisimwithout]

Hi have you tried FODMAP?

[houseofnerds]

Read Natasha Campbell McBride's book on the GAPS diet. It might give you a few ideas - some people find that they can't manage the full GAPS, but take parts of it and see some improvements. (Obv not for the psych effects so much, but useful in terms of gut health).
Take it or leave it, anyway - just an idea!

[SirChenjin]

I second the FODMAP diet - well researched, widely recognised as opposed to some fad thing.

[ChablisTyrant]

Many coeliacs get a false negative on the test. It isn't 100% accurate.

I agree FODMAP diet is the correct way to proceed. With probiotics.

[SirChenjin]

There's more info here on the tests if you want to revisit things with your GP before you start on the FODMAP diet www.coeliac.org.uk/coeliac-disease/getting-diagnosed/blood-tests/

[peggyundercrackers]

try a probiotic called Saccharomyces boulardii. your symptoms sound very like a friend of mine who has had multiple courses of metronidazole. they never got the bottom of my friends symptoms but since she has been taking these she has found they have helped immensely.

[newlark]

I had similar symptoms over the last few years which have largely improved (after seeing an nhs dietician after negative coeliac test) - I eliminated gluten and lactose initially and noticed that onions were a significant part of meals on the few days when I still had problems (one of the worst fodmap foods). The dietician suggested a short course of a high dose probiotic (VSL3) and also suggested the FODMAP diet.

[MoustacheofRonSwanson]

Another vote for FODMAPS

[BIWI]

I'd also suggest FODMAP.

Basically, though, it sounds like carbs could be your enemy - especially in the form of wheat and sugar.

[Artfooldodger]

I went through all of this last year. Thought it was coeliac, then IBS, then other allergies, even started worrying I had bowel cancer as it was getting worse & excruciating pain, loss of appetite, resulting in rapid weight loss. But finally discovered it was gallstones. Had my gall bladder out - problem solved!!! Just bear it in mind too . . . . .

[Auntieveronica]

The celiac test isn't fool proof. I've had friends who are very sensitive to gluten fail the test. Is it worth going gluten free for a fortnight just to try it?

[Superworm]

My coeliac bloods were negative and I was diagnosed by endoscopy. It's pretty common apparently.

DS had coeliac bloods which were inconclusive due to his IgA deficiency which is common with allergies but you need a specialist gastro doc to look at these. Personally I would take to coeliac uk for advice and probably push for testing.

[MarvellousMarbles]

YY w.r.t. false negatives on coeliac test. I would ask to be referred to a specialist gastroenterologist. Also, there is a lot of research now into 'Non-Coeliac Gluten Intolerance' where people have the same symptoms as coeliacs in response to eating gluten, but no antibodies (i.e. negative test). I think one of my DC might have this (the other is coeliac).

If you have exhausted all medical help, then I would consider going gf - really thoroughly, to the same level that a coeliac does. I have done this with the DC that I think has NCGI - I maintain his gluten-free diet to the same standard as his coeliac sibling's. And all his symptoms utterly disappeared within a month or two, and have never returned.

[bottersnikes]

A lot of helpful suggestions, thank you all!

I have cut out gluten and this seems to have eliminated some of my symptoms.
Looked into FODMAPS too, and the red list contains so many foods that I thought might be triggers, so I'll definitely be trying that!

I had to stop Symprove as it was just too expensive and have switched to an Optibac one, but having just checked the label, it has FOS in it so I'll look for the ones that have been recommended on here. Such a minefield!

I'm seeing my dietitian next month so we can discuss the FODMAP/probiotic thing further.

[MarvellousMarbles]

Sounds good OP, wish you luck!