Diagnosed with Duodenitis and currently waiting for biopsy results

[EmDerrane]

Hi it’s my first time on this forum today as I am still waiting (5weeks) for my biopsy results to come back . I went to the doctor a few months back as I’ve lost a lot of weight even though I Haney done anything different , stomach pains , diarrhoea, night sweats . My bloods come back with elevated liver enzymes so I had to go for an endoscopy ( which I poorly tolerated ) and came back with erosive duodenum with flattened appearance, so they testing for Celiac  . I haven’t had a clue what a duodenum was till I researched it . So they taken 4 biopsies in different areas of my small bowel . What is the likelihood this is a positive result ? I’ve rung GP but still no results 😫 suffering and even though I’ve eaten I still don’t feel fulfilled if that makes any sense and feel hunger pain all the time . They put me on lansoprazole . Any advice, I would be very grateful , Thankyou , Emily . 

[trents]

Welcome to the forum, EmDerrane!

In the blood testing that was done, were there any antibody tests ordered that are specifically designed to detect celiac disease? Here is a primer describing the tests that can be run to diagnose celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Flattening of the villi that line the duodenum/small bowel is the hallmark of celiac disease and an endoscopy with biopsy to check for such is the gold standard diagnostic procedure in confirming celiac disease. Usually, however, before an endoscopy/biopsy is done they will do a blood draw and check for antibodies characteristic of celiac disease. Also, it is common for liver enzymes to be elevated with celiac disease and your other symptoms also line up with celiac disease.

[EmDerrane]

Thankyou for the reply @trents Yates they did draw bloods the first time and then a second load 2 weeks before my endoscopy they didn’t tell me what they were testing for , but because of the symptoms I described They sent me for endoscopy . I will call my GP tomorrow and see if I can find out what they were testing for in the Second lot of bloods . Since I’ve looked on here today , there are other symptoms I’ve had for a couple of years , the tingling in hands and feet , pernicious anemia I had last year which I couldn’t understand why I had it . Hope I get the results soon , I’m still eating gluten as that’s all I eat is pasta , breads etc .  Thankyou for the reply I am pretty certain after today i could well be . Emily . 

[trents]

  On 11/21/2022 at 7:54 PM, EmDerrane said:

Thankyou for the reply @trents Yates they did draw bloods the first time and then a second load 2 weeks before my endoscopy they didn’t tell me what they were testing for , but because of the symptoms I described They sent me for endoscopy . I will call my GP tomorrow and see if I can find out what they were testing for in the Second lot of bloods . Since I’ve looked on here today , there are other symptoms I’ve had for a couple of years , the tingling in hands and feet , pernicious anemia I had last year which I couldn’t understand why I had it . Hope I get the results soon , I’m still eating gluten as that’s all I eat is pasta , breads etc .  Thankyou for the reply I am pretty certain after today i could well be . Emily . 

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The most common blood antibody test for celiac disease that primary care docs order is the tTG-IGA but as you can see from the link I provided there are others that can be run and ideally, should be.

Pernicious anemia is an autoimmune disorder that destroys the parietal cells in the stomach. The parietal cells secrete an enzyme known as "intrinsic factor" which is necessary for the assimilation of vitamin B12. Vitamin B12, in turn, is necessary for the assimilation of iron from the diet. That is why you are anemic. Historically, the only way to address that anemia was through B12 injections but research has shown it is also possible to address the B12 assimilation issue through mega doses of oral B12 so, apparently, there is an alternate pathway of assimilation that does not depend on the parietal cells, though it is much less efficient. Talk to your physician about your options for this.

If you have all testing complete now, you need to start a gluten-free diet. This might help to get you started:

Eating truly gluten-free will be your biggest challenge. There is a significant learning curve to it with regard to avoiding gluten as it is in so many foods you would never expect it to be, like soy sauce and most all canned soups. Eating gluten-free presents some real social challenges and sometimes friends and family will be dismissive and uncooperative.

[EmDerrane]

  On 11/21/2022 at 8:25 PM, trents said:

The most common blood antibody test for celiac disease that primary care docs order is the tTG-IGA but as you can see from the link I provided there are others that can be run and ideally, should be.

Pernicious anemia is an autoimmune disorder that destroys the parietal cells in the stomach. The parietal cells secrete an enzyme known as "intrinsic factor" which is necessary for the assimilation of vitamin B12. Vitamin B12, in turn, is necessary for the assimilation of iron from the diet. That is why you are anemic. Historically, the only way to address that anemia was through B12 injections but research has shown it is also possible to address the B12 assimilation issue through mega doses of oral B12 so, apparently, there is an alternate pathway of assimilation that does not depend on the parietal cells, though it is much less efficient. Talk to your physician about your options for this.

If you have all testing complete now, you need to start a gluten-free diet. This might help to get you started:

Eating truly gluten-free will be your biggest challenge. There is a significant learning curve to it with regard to avoiding gluten as it is in so many foods you would never expect it to be, like soy sauce and most all canned soups. Eating gluten-free presents some real social challenges and sometimes friends and family will be dismissive and uncooperative.

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Thankyou so much for your help this evening 

[cnazrael89]

Hello @EmDerrane,

On my EGD procedure report the GI doctor said "patchy discontinuous erythema of the mucosa was noted in the duodenal bulb and second part of the duodenum. These findings are compatible with duodenitis." He told me right after the procedure he wasn't able to see the villi with his endoscope to determine if they were atrophied or not. Ultimately, the pathology report came back positive for moderate to near complete blunting of the villi, positive for intraepithelial lymphocytosis and crypt hyperplasia (consistent with Celiac Sprue). There are certainly other things that can cause duodenitis but in my case I had positive tTg-IgA and DGP-IgG antibody tests from blood draws (very specific to Celiac), so I was already fairly certain based off of those test results I had Celiac disease. I only had to wait 2 weeks for my biopsy results and that felt like forever. It is very hard to be patient when you're waiting for the test results but hopefully you will have some answers soon. Take care.

[EmDerrane]

Thankyou @cnazrael89 for responding , I have looked up Duodenitis and it says too much use of NSAIDs which I don’t really take and my H Pylori was negative .. so I can’t think what other causes it could be ? I am going to ask for an appointment again with my GP tomorrow morning see if she can enlighten me on any news cos it’s very frustrating and I am showing all signs of celiac, tingling hands and feet , pernicious anemia last year which was a bit out the blue , I’m pale and thin and I have bad burning on top of my stomach after certain food/ drinks . I have had D , which the doctor put me on lansoprazole, it’s helped with D but not helped the sudden urges to go ! I really hope I get answers soon ! Hope your okay too and glad you got your positive result so you can start to heal . 

Emily 

[cnazrael89]

  On 11/22/2022 at 12:21 PM, EmDerrane said:

I have looked up Duodenitis and it says too much use of NSAIDs which I don’t really take and my H Pylori was negative .

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Exactly my same thoughts when I was waiting for my biopsy results too! Hopefully you can find out what labs they drew and see if they did in fact draw any Celiac labs that @trentslinked to above. If you had some positive celiac blood tests, the likelihood is high that you have Celiac Disease. You already have had the "gold standard" test to diagnose Celiac (endoscopy with biopsies), so now it truly is a waiting game unfortunately. If they didn't draw Celiac blood tests, you might ask to have them drawn even though you've had the endoscopy performed because if the blood tests are positive and you do indeed have Celiac as confirmed by biopsy, they can follow up on those blood tests later on to make sure they are coming down into normal ranges after you've been on a gluten free diet for a period of time. Just a suggestion. My GI doc plans to recheck my Ttg-IgA and DGP-IgG again, 6 months after diagnosis to make sure they're coming down after going gluten free. Hope this is helpful. I'm also new to Celiac so I don't necessarily know all the intricacies like the experienced moderators on here but I've picked a few things up so far from others advice that I hope are helpful for you too!

[trents]

Emily,

Just want to emphasize that if you will be needing to get another blood draw done to specifically check for celiac antibodies, you must have been eating regular amounts of gluten (2 slices of wheat bread daily or the gluten equivalent) for 6-8 weeks leading up to the blood draw. Many make the mistake of beginning the gluten free diet before all testing is complete and by so doing invalidate the testing which leaves them in limbo because of conflicting results.

[EmDerrane]

Hi @trents, yes I haven’t gone gluten free yet , I wanted to be sure it was before I started . My GP didn’t mention anything about celiac disease I’ve been diagnosed with gallstones too which I forgot to mention hence why I had to go for CT first then the endoscopy cause of my other symptoms . So celiac didn’t get mentioned at all until I got my endoscopy report . So since then I haven’t spoken to no GP as I was awaiting my biopsy results . So I’m in limbo , I am ringing my doctors first thing in the morning to get a slot to speak to her tomorrow about my concerns and ask about the celiac Antibodies . I am in the UK and NHS under strain so I’ve put it to that for the delay , it says on the letter expect 4-6 weeks for my Histology report . But it’s just not got back yet. 
Emily 

[trents]

Perhaps the doc will forego an antibody test since the endoscopy/biopsy is positive for blunted villi. The endoscopy/biopsy if positive is the gold standard test anyway and is usually done only when antibody tests are positive as confirmation.

Edited November 22, 2022 by trents