Biopsy confirmed?

[Goodlife79]

Hi all. First post here :-) 

I recently received my biopsy results from my endoscopy which showed lymphocytes in my duodenum. My surgeon said this is possibly celiacs and ordered a blood test to confirm. I had the blood test done 2 years ago and it was negative. So my question is could it really be ceilac and has this happened to anyone else? Also does anyone else know if this could be a false reading from the biopsy? And if the blood test is negative will he still assume celiac ... Again I would love to hear your stories on diagnosis if similar to me,

So many questions! I get my results on Friday as I have to have further testing for other non-related things from the endo and just want to know the likelihood I guess. Feeling a little daunted and need to start thinking ahead if this is happening 

Thanks in advance xx

[kareng]

Did they say if the villi are damaged?  did they do a full Celiac panel or just a TTG? 

[squirmingitch]

What were they looking for when they did the endoscopy? This is all backwards. You usually get a blood test first & then if that's positive they do an endoscopy. 

Did they tell you to make sure to continue eating gluten until the blood test is taken?

[GFinDC]

Right, usually they do an endoscopy after a positive blood antibody test.  The biopsy confirms the antibody results.  Doing them in the reverse order doesn't hurt anything though.  Sometimes people "fail" the antibody tests but still have gut damage.  Not everybody makes the same antibodies or in the same quantities.  Anyway, you should make sure they are doing the complete celiac antibody panel, not just a ttg test.

And don't worry if the celiac tests are positive for gliaden antibodies.  Going gluten-free is an adjustment to your diet. Quite a few people around here have managed to adjust successfully.  It takes some effort, but anything worthwhile does they say.

[Goodlife79]

Sorry  To give you more info I had the endoscopy because I was diagnosed last year with Barretts Esophagus and gastritis. I've been on medication since but still had issues so they went back in to check how everything was going and to make sure the Barretts hadn't turned into anything nasty. I had a celiac blood test in 2014 ( negative) and the endoscopy in 2015 didn't show lymphocytes in the duodenum well that's if he biopsied that. I also had a colonoscopy with this years endo and all of that came back fine - I thought if I was celiac that would be affected also?

As far as I know the biopsy only showed lymphocytes (white blood cells?) in the duodenum no damage to the villi but he used many big words that I didn't understand so he could have said more. With the blood test all I know is that I had a blood test for Celiac - I didn't know there were different tests for it. I'm a complete newbie with all this stuff so I just don't get what questions to ask him. 

I'm so impatient I just want to know. I have a big family, a husband that is FIFO and I'm a stresser. 

[Sugarcube]

Several conditions can cause increased lymphocytes in the duodenum including Celiac. 

The blood test will help confirm /rule out Celiac.

If your villi is normal along with negative celiac blood test, then this would make celiac unlikely.

Do you know which blood test has been requested now and two years ago?  Its possible that something could have been missed if the full celiac blood panel was not run.

 

[squirmingitch]

 

Sorry  To give you more info I had the endoscopy because I was diagnosed last year with Barretts Esophagus and gastritis. I've been on medication since but still had issues so they went back in to check how everything was going and to make sure the Barretts hadn't turned into anything nasty. I had a celiac blood test in 2014 ( negative) and the endoscopy in 2015 didn't show lymphocytes in the duodenum well that's if he biopsied that. I also had a colonoscopy with this years endo and all of that came back fine - I thought if I was celiac that would be affected also?

As far as I know the biopsy only showed lymphocytes (white blood cells?) in the duodenum no damage to the villi but he used many big words that I didn't understand so he could have said more. With the blood test all I know is that I had a blood test for Celiac - I didn't know there were different tests for it. I'm a complete newbie with all this stuff so I just don't get what questions to ask him. 

I'm so impatient I just want to know. I have a big family, a husband that is FIFO and I'm a stresser. 

Okay, this makes more sense now. Was the celiac test in 2014 part of the checking to find out what was wrong with you which resulted in the Barrets dx? 

NO, a colonoscopy will not diagnose celiac disease at all. The biopsies for celiac disease are taken in the small intestine not the colon.

You need to get your records, both past & present. If you could post them here then we'd have a much better idea of what's going on and be more able to tell you what you might be looking at.

When we say you might not have been given the right celiac blood panel, we mean the FULL, CURRENT panel and not just a primary screening. The screening is good but it does miss celiacs. We have members who tested negative on all but the DgP portions so when one has a situation like yours, you need to cover all the bases & have the complete panel done. Here it is:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

If you post your results on the blood work make sure to post the reference ranges listed because different labs have different ranges.

It would be imperative to know if the doc took biopsies for celiac when he was doing the endoscopy. How many & where exactly from? Some docs just rely on visual & that's not good enough to dx celiac disease. Biopsies are the only way.

[Goodlife79]

Thanks for the replies. I have been trying since Friday tohave my results emailed to me and I am still waiting. I've rung four times now and each time they say they are going to email them. I will post them once I receive them :-)

I have a feeling that the test I had in 2014 was just a screening test as it was six months or so before my endoscopy. I am assuming this one would be the full testing but you never know. He didn't really give me information just that he was ordering a blood test for Celiac and an ultrasound on my gallbladder and I didn't know what questions to ask. He read the histology report to me but that was like a different language lol and there were a few little things that he mentioned like duodenum cells in stomach(?), still the severe reflux even though I am on two lots of medications, Barretts unchanged and melanin throughout my colon - which he said was due to the overuse of laxatives ... I've never had laxatives and of course the lymphocytes in the duodenum but I can't remember if he said there was damage to the villi!  

Anyway, fingers crossed the elusive email comes through soon! 

Thanks for humouring my lack of knowledge and supporting me through my impatience this week - I only have a small time frame where my husband is home and I want answers so I can get organised before he leaves xxx

[Goodlife79]

So I finally have the blood test results are in my hands and they are all negative. IgA, IgG and ELia. These are then bloods I had taken on Friday. They are either 1 or >1.

I've attached the biopsy results for you to peruse. Dr Google (yes I know I shouldn't but I wouldn't have found you guys if I didn't Google) indicates that having found intraepithelial lymphocytes on the tips of my villi means early coeliac but if this is true why would my blood test be negative?

Not feeling like there are any real answers now. Not that I was hoping for coeliac disease but I know I would have been relieved to know my years of suffering were actually something.

Open Original Shared Link

[Sugarcube]

I couldnt open the attachment. But as per the below study has your GI ruled other the other causes of increased intraepithelial lymphocytes (IELs) ?

Per this study, Increased IELS would not appear to be entirely celiac related. 

Open Original Shared Link

"Increased IELs in small bowel mucosa have also been associated with autoimmune disorders, tropical sprue, food protein intolerance, Helicobacter pylori-associated gastritis, peptic duodenitis, parasitic and viral infections, as well as the development of intestinal lymphoma"

[Goodlife79]

 

I couldnt open the attachment. But as per the below study has your GI ruled other the other causes of increased intraepithelial lymphocytes (IELs) ?

Per this study, Increased IELS would not appear to be entirely celiac related. 

Open Original Shared Link

"Increased IELs in small bowel mucosa have also been associated with autoimmune disorders, tropical sprue, food protein intolerance, Helicobacter pylori-associated gastritis, peptic duodenitis, parasitic and viral infections, as well as the development of intestinal lymphoma"

Open Original Shared Link

 

[Goodlife79]

 

Sorry was trying to post all the biopsy report but failed lol

[Goodlife79]

 

I couldnt open the attachment. But as per the below study has your GI ruled other the other causes of increased intraepithelial lymphocytes (IELs) ?

Per this study, Increased IELS would not appear to be entirely celiac related. 

Open Original Shared Link

"Increased IELs in small bowel mucosa have also been associated with autoimmune disorders, tropical sprue, food protein intolerance, Helicobacter pylori-associated gastritis, peptic duodenitis, parasitic and viral infections, as well as the development of intestinal lymphoma"

1

Sorry Sugarcube I was in between the school run, dinner and husband arriving home so didn't read your reply properly. He said there were no signs of infection and that he thought it was either coeliac or an autoimmune disease. He didn't say anything about allergies. Thanks for the info you've given me I think it's very unlikely celiac...

[Sugarcube]

Yes, without damaged/flattened Villi and negative blood tests, it seems unlikely that you currently are a celiac. 

Did they run the Celiac gene test? If you dont have the celiac gene then your risk of ever becoming a celiac is negligible. 

 

[Goodlife79]

 

Yes, without damaged/flattened Villi and negative blood tests, it seems unlikely that you currently are a celiac. 

Did they run the Celiac gene test? If you dont have the celiac gene then your risk of ever becoming a celiac is negligible. 

 

No they didn't run the gene test. I'll see my doctor on Friday and see what he says about it all. Looks like no answers for my symptoms... Thanks again for the help.

[Jmg]

If you reach the end of the line with the doctor's and they conclusively rule out celiac, still give serious consideration to trying the gluten free diet. I had a negative blood test and endoscopy, but gluten has a profound effect on my health. I don't know if I'm atypical celiac (some test negative / require camera endoscopy, non celiac gluten intolerant or simply bats$#& crazy but gluten and me don't get along. Even a week or so spent keeping a food diary and noting symptoms might give you an insight into whether diet is an issue? Don't do it if you're having further tests however as going gluten free can lead to a false reading on a test. 

Good luck!

 

 

[Goodlife79]

 

If you reach the end of the line with the doctor's and they conclusively rule out celiac, still give serious consideration to trying the gluten free diet. I had a negative blood test and endoscopy, but gluten has a profound effect on my health. I don't know if I'm atypical celiac (some test negative / require camera endoscopy, non celiac gluten intolerant or simply bats$#& crazy but gluten and me don't get along. Even a week or so spent keeping a food diary and noting symptoms might give you an insight into whether diet is an issue? Don't do it if you're having further tests however as going gluten free can lead to a false reading on a test. 

Good luck!

 

 

I will be definitely giving this a go after I've seen the doctor tomorrow. I'd like to see how it affects my physical symptoms once I take it out of my diet. Thank you xx

[Jmg]

 

I will be definitely giving this a go after I've seen the doctor tomorrow. I'd like to see how it affects my physical symptoms once I take it out of my diet. Thank you xx

Come back here when you try the diet because there's a lot of good advice and support to be had, you have found a good place  Noting down what you eat and how you feel is very useful because you can soon forget how you were on a particular day. If you start very simple with only whole foods with no grains or dairy, a week of salads, veg meat fish etc..  you could then introduce additional foods and see via your diary if/how they impact on you.

Even if gluten isn't a problem for you your body will probably enjoy a break from any processed foods so you shouldn't leap to conclusions immediately. For me I was only sure once I had an accidental ingestion of gluten that I didn't know about until after symptoms reoccurred. I traced it back through the food diary and voila! 

As above though, once you cut it out, adding it again for further testing can be unpleasant. So use your meeting with the dr to ensure their testing of it is at an end and let them know you're going to try a gluten-free diet.