Not celiac... something else? How do i pinpoint it?

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My dh has had rectal bleeding on/off for yrs. I was unaware of severity until recently when he was diagnosed with severe anemia. He had a transfusion, iron iv and a long course of iron tablets. He had s colonoscopy and endoscopy. All they can find is haemorroids and a hiatal hernia.

They did a biopsy and it came back negative for celiacs.

But the bleeding is very hit and miss. We have found a couple of things that aggravate it- caffiene and junk food.

Is it possible to be gluten intolerant but not be diagnosed with celiacs? And how can you monitor diet/symotoms? Does anyone have experience of rectal bleeding caused by an allergy/ intolerance? He is so fed up, he is really getting down about it and i really want to help him.

He is due to have a small capsule endoscopy 'in the near future' so we are waiting for an appt.

Crohns or Ulcerative Colitis of some sort?

It is possible to be gluten sensitive but not a coeliac, 1:9 coeliacs don’t show up on standard tests due to an immune sub class deficiency and are referred to as ‘hidden coeliacs’

That said, rectal bleeding is not a general symptom of coeliac disease. The colour of blood passed should be an indication of where in the gut bleeding is occurring

If bright red then it’s low down, dark to black shows partial digestion higher up the gut and these all suggest different conditions

If you’re not happy then you need to be asking for further investigation rather than stumbling around trying different diet as it can be hit and miss and some diets help more than one condition

I couldnt agree more schroedinger... i feel like since the colonscopy didnt find anything my dh is just left to suffer. He has bled heavily for 8 days concurrently and no one gives a toss.

He was tested for celiacs due to his v low iron levels which i believe can ve a symptom.

The blood is bright red but his consultant said he wanted to do a small capsule Endoscopy to rule out any problems in the small bowel. Still no appointment as yet.

I am very pleased no one thinks it is anything urgent/ serious but on the other hand he is suffering mentally with esteem and confidence along with feeling pretty rubbish due to losing blood. Its judt a mess tbh.

I had bleeding and pain when going to the toilet. You might be right with pointing the finger at allergy/intolerances. I saw GP many times for my problem, given various creams and laxatives (despite not being constipated) none of which solved anything, just treated the symptoms and made it slightly less painful.

I came across a randomised controlled trial which found undiagnosed food intolerances can cause fissures, pain and bleeding. I went dairy free for three weeks, no change. I went gluten free and everything got better (even things I didn’t realise were connected, like swelling sore gums). I stayed gluten free for five months before wondering if it was just a coincidence, so I tried eating gluten again. The bleeding and pain came back and I got a mouthful of ulcers.

Told all this to the GP, they sent me for lots of blood tests. All came back normal including the coeliac screen. She told me I could be intolerant but not coeliac, so cut out gluten again and if my symptoms stop again then I’ve got my answer. So I did that and I’m fine now so long as I don’t get glutened.

I do think I should have been sent for further testing. The result of my coeliac screen was so low they should have suspected I might also have IgA deficiency which would give a false negative on the standard test. But anyway...it is possible to be sensitive to gluten in some way and it not show up on tests.

Monkeyinshoes thank you for your post- that is really interesting. His symptoms have eased and he has now gone gluten/alcohol/caffiene free.

If he can stay symptom free for a few weeks i think then we night have to test it by trying some gluten. The longest he has gone without bleeding is 3 days in the lasr 2 months so fingers crossed.