Pernicious Anaemia Society

Confused about Gastroscopy and Colonoscopy results

Had gastroscopy and colonoscopy yesterday.

Gastroscopy revealed "..flattened mucosal pattern in D1 and D2: Coeliac ??" - and now waiting for results from samples taken to be tested.

Colonoscopy revealed nothing more than internal haemarrhoids, although have had diarrhoea for 3 years.

So this is me now:

Vitamins B12 and D deficient, osteoporosis of spine.

Folate and ferritin levels keep dropping and have never managed to get them to optimum levels even with daily supplements.

Continually raised MMA levels: usually indicating B12 deficiency or small intestine bacterial overgrowth (SIBO).

Lactulose breath test result: either "fast transit" or SIBO.

And now (possibly) coeliac.

.. I don't know, you wait for 3 years for a diagnosis and then 3 come along at once !

Very confused about this: can anyone help ?

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Hi Cherylclaire no advice to offer, only sympathy, and a hex on all those uncaring doctors.

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D1 and D2 are areas of the duodenum, the first part of the small intestine after the stomach. Normally the wall of the duodenum (the mucosa) has lots of little finger-like projections, called villi. These greatly increase the surface area, which helps with absorption of nutrients.

Your duodenum, by the sounds of things, is lacking these villi, which makes it appear flat.

One cause of flattened duodenal mucosa is coeliacs disease. There may be others but I'm not aware of them.

The good news, if it is coeliacs, is that they may find something to help with your symptoms.

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Possible, fbirder , let's hope so. Wonder if this negates earlier SIBO possibility (from breath test) or makes it more likely eg. one being the catalyst for the other ?

No wonder I can never get enough B12/folate/ferritin/vitamin D !

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Hi Cherylclaire.

So hmm...

Just a couple of thoughts...you obviously have absorption problems (deficiency B12, low folate, ferritin, vitamin D etc)...and this could be for many reasons, some of which could include coeliac's and SIBO.

Here's some information that may (or may not) help make sense of what's going on:

Extract from research paper (lactose test, potential relation between coeliac's and SIBO etc.):

A proportion of patients with celiac disease have a poor response to a gluten-free diet, which may be due to SIBO. Treatment of SIBO in patients with poorly responsive celiac disease using antibiotics has been shown to be successful in alleviating symptoms [36–38]. This has been demonstrated primarily in small, observational studies, typically using breath testing.

Here's a link to the full paper:

ncbi.nlm.nih.gov/pmc/articl...

Here's something about coelic's disease (including symptoms-may explain three year history of diahorrea):

coeliac.org.uk/coeliac-dise...

And something about haematological manifestations coeliac disease (including raised MMA levels and multiple deficiencies):

ncbi.nlm.nih.gov/pmc/articl...

So, symptoms together with absorption problems and multiple diagnosis of SIBO and coeliac's, together with consistently raised MMA could well be linked.

My goodness...this has been going on for so long...it'd probably be a relief to have coeliac's confirmed...'cause this may we’ll be the 'missing link' that you've been looking for...and as fbirder says...result in efffective treatment...at long last 😉😀.

But my goodness...something very worrying about the fact that it's take three years...

Hope the papers help, let us know how you get on.

Take care

👍

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Strange also that I was blood-tested by GP ages ago (Feb 2016 ?) for coeliac disease and it was ruled out based on result. Perhaps another test that doesn't stand up to much scrutiny.

Not quite there yet, as results from biopsies pending, but may explain why I keep having to continually top up and why I am often struggling to improve.

Wonder what Metabolics will say next week ?

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Hi,

Coeliac UK helpline

coeliac.org.uk/coeliac-dise...

Coeliac UK may be able to tell you where to look for further info.

"now waiting for results from samples taken"

Can your doctors confirm Coeliac disease from samples or are they going to do further blood tests for Coeliac disease?

NICE guidelines Coeliac disease (2015 version)

nice.org.uk/guidance/ng20

nice.org.uk/guidance/ng20/c...

Coeliac blood tests

coeliac.org.uk/coeliac-dise...

I am not medically trained.

Have they considered doing further Intrinsic factor Antibody tests? Although these may give false positives if blood taken close to B12 injection.

labtestsonline.org/tests/in...

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Hi Sleepybunny - results from biopsies taken will be sent to Gastroenterologist in about a week-10 days, and will then get an appointment with her to discuss findings. Don't know how long that will take to come through. Not sure GP is aware yet.

Was blood-tested for coeliac disease in (I think) Feb. 2016- it was ruled out then, based on result.

Trouble with intrinsic factor antibody test is stopping the injections, without which I could not work.... since I've only recently gone back on a phased return, I'm reluctant to deteriorate to my previous "unemployable" level ! Believe I was once tested. I see what you mean though, because it does appear that my problems are autoimmune, and a family history includes this quite strongly - Graves disease, psoriasis, etc. I will ask Gastroenterologist - or Metabolics consultant next week. Thanks for that.

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If it's a recently devised test procedure (i.e., less than a decade old) then the IFAB test only needs yo to stop injections for a few days.

The blood test for coeliacs will give a negative result if you've not eaten gluten for some period (I'm not sure how long) beforehand.

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Useful to know- thanks, fbirder . Maybe retesting worth a try after biopsies .

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"The blood test for coeliacs will give a negative result if you've not eaten gluten for some period (I'm not sure how long) beforehand."

Sounds like the go ahead to stuff yourself on a large plateful of delicious cakes before you have the test.

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Hi,

I think current UK recommendation is to eat plenty of gluten daily for at least 6 weeks prior to any test for Coeliac disease.

coeliac.org.uk/coeliac-dise...

Cherylclaire, did you have both the following tests when tested for Coeliac disease in 2016?

1) tTG IgA

2) total IgA

If they haven't done Total IgA test, I don't see how they can rule out Coeliac disease. People with IgA deficiency need other tests for Coeliac disease. See link on Coeliac blood tests above or NICE guidelines on Coeliac disease for more info.

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That's better still - 6 weeks of delicious cakes - chocolate eclairs, walnut cakes, chocolate tarts and coffee cakes, rhum babas, treacle tarts, - - - - and so on. (Actually I don't like chocolate so I would skip those.)

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- worse diets to have ! (I'm thinking of Fodmap in particular)

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What on earth is Fodmap - sounds like something you would feed horses or goats on.

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Tastes like it, beginner1 . It's an elimination diet for 6 weeks: beloved of dietitians, it is the punishment for those who are suspected of having IBS ! Then I think you reintroduce food groups slowly - not that I ever got that far. Very long list of items that you cannot eat and not sustainable long-term.

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Oh dear how horrid.

I suppose you have tried the Symprove, Biokult, lime juice, and or sauerkraut remedies. They have made my reflux, indigestion and thrush all disappear, but they come back if I neglect them. But perhaps that is not what is wrong, but just a thought.

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Well, I will bear that in mind, beginner1 , because I do seem to have low acidity ( no-one told me, I just took fbirder's advice and drank bicarbonate of soda in water: no acid=no bubbles=no burps....better fun if you do it with a "normal" person as control for experiment !)

Not going to do anything at present regarding diet as I'm certain that they are not done with me yet re. tests and although it seems to be SIBO and coeliac disease at the moment causing my deficiencies, I would really like a permanent diagnosis since it's been 3 years now !

You know how you get scared that you will skew any results if you change what you do ?

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