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Biopsy result interpretation

Hi folks, I posted on this lovely forum at the end of June see below.....Hi all,
Firstly I am not diagnosed but really wanted some insight into the possibility of IBD after a recent upper endoscopy. My GP had arranged this procedure due to my problems with long standing acid reflux and upper abdominal fullness and pain.

Although this was the reason for my endoscopy yesterday I have had years of intermittent and unpredictable diarrhoea and tummy cramps. This had been put down to IBS after an upper and lower endoscopy 4 years ago showed nothing.

So the GI consultant saw me after the procedure yesterday and told me my gullet seemed fine but he was surprised to see some apthous ulcers in my duodenum. In his report he wrote 'ulcerated localised mucosa' and 'erosions x3 apthous type'
He had done an H pilori test which was negative and previously been negative. He asked me if I used anti-inflammatories much (I don't) as apparently this is the other main cause of erosive duodenitus.

He has taken biopsies and talked of doing a colonoscopy and a scan ??? To check for more of these ulcers. In the procedure comments he has written possible IBD awaiting pathology.

could I please have some thoughts on this ? Are these findings really suggestive of IBD ? And what would the pathologist be looking for in the biopsies ?
Many thanks in advance folks. X

....... I have now received my biopsy results and would love someone to tell me what the results are likely to suggest before my Gi appointment in a couple of weeks....

'Clinical details, heartburn/reflux, duodenal apthous, ulceration ?, crohns.
Biopsy shows 2 fragments of small bowel mucosa, towards the edge of one fragment there is surface ulceration, fibrinous excudate and secondary epithelial regenerative changes. There is no evidence of malignancy. No organisms are identified. Granulomata are not present. The features are regarded as non specific active inflammation and ulceration.'
 
Hi there!

Welcome to the forum. I suffered the same symptoms with unintended weight loss to boot. I also showed apthous ulcers but unfortunately my duodenum was not biopsied and it was assumed to be h Pylori.

12 months later they repeated the test as I got worse, and took biopsies which suggested Crohn's. One MRI and colonoscopy later and it was confirmed. I also have Terminal ileum involvement, but at the time I had no symptoms beyond feeling full after little food, vomiting, heartburn, reflux, and the weight loss. I never in a million years would have suspected Crohn's.

It sounds as though your doctors are doing all the right things so hang in there! I'm led to believe that duodenal disease is quite unusual, hence why it wasn't considered initially in my case.

Let us know how you get on , all the best!
 
Thankyou Sophabulous (great name 😉)

I really feel I don't fit the usual criteria, I have not lost any weight and although I have lots of cramps and D most days I generally manage ok.

I have ongoing low ferritin levels (even when on high doses of iron) and my last blood test showed I had elevated platelets, I'm wondering if either of these have any relevance.

I guess I can only speculate until I see the GI consultant.

Thanks again for your reply, I'll keep you posted. X
 
Thank you for the reply! In 2012 (4 years before I was diagnosed) my platelets were through the roof. At the time I exhibited no weight loss or any other symptoms. My platelets were high, iron & folate low and I had medications for those for several months. It was only in 2014 that I actually displayed the weight loss etc and was referred to my local hospitals GI department, hence the gastroscopy with no biopsy debacle.

Whatever is going on you are on the right track for sure, please keep us updated on your progress!
 
The duodenum is where iron is absorbed, so duodenal mucosal damage does result in anemia. I was first disgnosed after blood tests showed severe anemia and a bone marrow biopsy found no iron in my body. Every patient presents with different symptoms. Since you have diarrhea as well you could have inflammation in other parts of your small and/or large intestine. The important thing is to treat those ulcers so you can absorb nutrients properly. One fairly simple thing your GI can prescribe is a PPI to reduce stomach acid to see if that will allow the ulcers to heal. There is some evidence that high dose PPIs can help reduce gastro-duodenal crohn's and the side effects are minimal, especially compared to other medications. But whether or not you have crohn's you shouldn't have intestinal ulcers or inflammation and it is important to treat them. So get further imaging (like a colonoscopy as your GI has suggested, and even a capsule endoscopy or upper GI series) to make sure you have no other inflammation and then you and your GI can decide on the best treatment. Let us know how you are!
 
Thanks Jabee, I forgot to add that I actually take Omeprazole 20mg twice daily already.

The point about the iron absorbsion is interesting, I hadn't considered that. I just kind of accepted it was due to my periods.

I have had symptoms going back years and actually did have a colonoscopy/upper endoscopy 4 years ago which showed nothing. The irony is that I'd accepted it was ibs and the recent upper endoscopy was to look for any damage caused by the acid reflux/heartburn.

What is it about apthous ulcers that make people wonder about IBD ?
 
What is it about apthous ulcers that make people wonder about IBD ?


I'm not sure, but my IBD nurse just said to me that they are a known characteristic of Crohn's. I know in my case the paperwork from my second gastroscopy said they only took biopsies to 'rule out' small bowel IBD so there must be other things they can be caused by too. It's a very frustrating process isn't it?
 
What is it about apthous ulcers that make people wonder about IBD ?


I'm not sure, but my IBD nurse just said to me that they are a known characteristic of Crohn's. I know in my case the paperwork from my second gastroscopy said they only took biopsies to 'rule out' small bowel IBD so there must be other things they can be caused by too. It's a very frustrating process isn't it?
 
Arghhh isn't it just. The most frustrating thing is having the information and being left wondering until the next appointment. The mind goes into overdrive with possibilities.
 
Hi all, so it's been a month since I last posted. I have seen the GI consultant again. He sent me for an MRI small bowel study with contrast and a fecal calprotectin test. I've just had the results of these today. The MRI showed nothing abnormal but the FC test was borderline at 62. He has decided to retest in 6 months.

Am I right in thinking this is pretty unlikely to be due to IBD considering the extremely high results I've seen some people have ? Has anyone else had a borderline result like this ? If so what was the outcome ?

Thanks in advance peeps xx
 
It's great that the MRI was normal! I'm not too sure what (other than inflammation) might raise your fecal calprotectin level, and I think fecal calprotectin isn't high in patients with small bowel crohn's. I think you should get another endoscopy and then as well (if you can), and maybe a capsule endoscopy. If you don't have a hiatal hernia you might want to chase down the origins of your reflux and bloating. Personally I'd want to know what caused those duodenal apthous ulcers. You don't want your gut to be damaged because of them. I hope you stay heathy!
 
Thanks Jabee,
I'm in the UK so the consultant has basically told me that is the plan. I felt a little uncomfortable pushing for any further tests because he really downplayed it all and I didn't want to seem like a hypercondriac. He hasn't really mentioned what the cause of the duodenal ulcers and inflammation was down to but didn't seem too worried about them. He said if I felt worse or lost weight/had blood in stool then I should ask my GP for a faecal calprotectin sooner than 6 months. He kid of suggested that if it was anything that needed treatment it would have showed.

I think regardless I'll get my GP to repeat the FC, platelets and ferritin/iron in a couple of months to see if things settle or get worse.

Thankyou so much for your reply. X
 
I think it's a really good idea to re-test the iron and ferritin (and the fecal calprotectin) in a couple of months. The first sign of crohn's for me was severe anemia (my hemoglobin was somewhere around 8. My GP sent me to a hematologist for a bone marrow biopsy and it turned out I had no iron in my body. My GI then did an endoscopy and found severe ulceration and a structure in my duodenum. I don't think I was losing weight, but don't usually weigh myself a lot anyway. I can't remember: were you tested for celiac disease?
 
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